June 2, 2021 at 11:33 am #30378
We want to support each of you as you celebrate special occasions and deal with medical appointments. What type of events do you have planned for June? Do we have any June birthdays?
I have a few medical appointments, but just routine, for the most part, thus far. I am keeping an open mind because I know a few others will pop up.
What’s on your calendar for June? Please feel free to share medical and non-medical-related events.
June 2, 2021 at 4:28 pm #30383
Cullen is due for a few appointments, especially with nephrology. I’m sure that will take place this month.
I finally bit the bullet and scheduled an appointment for the end of June with a gastroenterologist. I’ve had reflux and digestive issues for a long time and putt off dealing with it. Now I fear it has become a lot more concerning finally making me anxious to see a doctor. Will I ever learn to practice what I preach?
June 3, 2021 at 1:03 pm #30393
Hi @colleensteele, I hope that Cullen has a good visit with Nephrology.
I had to laugh as I think we are better at preaching than taking our own advice.
I, too, have put off Gastro, Dentist, Hematologist, and a few others. Life gets hectic and time flies by. Plus, COVID has pushed many of those appointments back.
You took a huge step in scheduling that appointment. Please keep us posted and I hope that they will find a simple solution to your GI issues.
June 6, 2021 at 10:12 am #30416
I too had to laugh at the way I procrastinate.
I have a tooth that will no longer be an actual tooth if I don’t get to the dentist soon.
I know I should, but I find every excuse in the book not to.
I do not have any scheduled appointments for the month of June.
I know that we are taking the 8 hour road trip to Omaha this coming week.
We are going there to pick up our new travel trailer.
Then it is likely we will be headed to California by the end of the month.
My MIL was hit head on by a drunk driver back in August and was so severely hurt that she is still in an assisted living facility.
We had hoped she would be able to return home but it looks like this will be her permanent home, provided we get her approved for Medical.
We will head out to clean out her apartment and get her settled in.
My sister lives there and it will be great to see her.
June 7, 2021 at 7:38 pm #30438
@s-steppins I am so sorry to hear about your mother-in-law! My heart goes out to all of you. My husband was hit head-on by a drunk driver and it ended his military career. It’s a hard thing to go through on many levels. But it sounds like she is blessed with a loving and caring family.
I hope it all goes well. We are here for you anytime you need a “break” and/or a place to vent.
June 7, 2021 at 12:03 pm #30429
Oh no, @s-steppins, I am sorry to hear about your MIL. That is terrible that a drunk driver hit her. What a tragedy. Is that Southern California?
It sounds like you are busy all month. No time for medical appointments, LOL. Yes, we all seem to procrastinate; I do tend to do that too. It is more often with the dentist and Gyne, hehe.
You will be traveling, so I hope that you will continue to pop in and update us. It is once that you will visit your sister, too. That answers one of my questions in another post.
Did you get your oxygen situation squared away for the travel trailer adventures?
June 8, 2021 at 12:10 pm #30445
@jenc I am hoping that this short trip to Omaha will better tell the story about my oxygen.
We purposefully bought a trailer with a space for my big concentrator.
We will be staying in a hotel for a couple of nights as well and I will let you know how it went upon our return.
This is the first time I am traveling in almost 2 years.
I am excited to go somewhere.
@colleensteele thank you. I often come here when I need a break. 🙂
It’s nice to know that I can.
June 8, 2021 at 12:42 pm #30448
@s-steppins I am excited for you! I’m sure it will all go well. It’s nerve-racking preparing for a trip with medical equipment and health concerns, but once you are on the road just try to relax. When we traveled with Cullen during his PH days I would stress until my behind was sitting in the car. Then I did my best to clear my head. I did everything I could to prepare and then it was time to just sit back and enjoy the trip.
We will be looking forward to hearing updates.
June 8, 2021 at 1:34 pm #30457
Aww, @s-steppins, I am so excited about your trip. That is exciting and nerve-wracking too. As Colleen mentions, preparing is never-ending, but things should be enjoyable once all settled and on the road. Please do come and let us know how things are going, but we also want you to enjoy that free time.
Let us know if we can help in any way. Did you make a list and pack extra meds, etc.? All medical contact save on your phone is a great idea. OK, I know you probably have a ton on lists. Yes, I am a mom, can you tell? Hehe
June 8, 2021 at 2:18 pm #30459
Going to have my gall bladder removed on the 16th
June 9, 2021 at 11:52 am #30469
Hi @clydedodge, I will be thinking of you next week for your gallbladder surgery. I am sending all of my positive vibes and prayers your way.
Have you been dealing with pain and complications? I had mine out years ago, but it was before PH and in an emergency. It was quick and painless surgery as it was laparoscopic. That and I was in so much pain for weeks leading to the removal.
Thanks for sharing. Please do keep us posted.
June 8, 2021 at 3:09 pm #30462Randolph ReynoldsParticipant
June was such a special month for me over the years. I graduated from the Air Force Academy on June 5th some 58 years ago. I received my first fighter assignment in June. It used to be that June was the best month in Prescott because of the mild temperatures and the afternoon showers. It was in June 1966 that I met my wife.
This month I become an octogenarian. My brother and sister are coming out to mark this special moment. They came ten years ago as well. But there are the PAH management issues now. Those continue on with their side affects and limitations. It seems that everyone here is breaking out back to normal but I have been at my normal all through the past year – tethered by tubing to additional oxygen devices. It is depressing to be depressed in June. We looked into renting a RV to travel with my concentrator and carry all my oxygen bottles but there were too many obstacles. Thus I will remain home while my wife goes off to my son’s wedding that was delayed for the past year or two.
I do hope that this month will bring good news to all of us who are concerned about their health, the state of the nation, and capturing joy
June 9, 2021 at 12:02 pm #30470
Hi @ripple76, I am so happy to see your post. I enjoyed reading your story about how June was so special to you. Please try to hold on to those wonderful memories.
This morning, I was thinking, I am still tethered to my O2 24/7 after COVID. That and this Texas heat and humidity is a sucker for breathing. But, I made it through and am here.
It can be difficult to find the silver linings, especially after dealing with PH and many years.
You mention traveling by RV; I did recently post about a smaller size travel oxygen concentrator. I am so sorry about you missing your son’s wedding. That has to be one of the most difficult. I hope and pray that something will come into place so you can make it. Is the wedding this month? Or, do you have a bit more time to search? As a retired Air Force pilot, I am certain that you are looking into anything possible.
Thanks for your positive wishes for all of us. But we are sending those positive vibes right back to ya in AZ. I am sorry that you are struggling so much with depression. Are you already on meds to see if that helps any? I realize the meds won’t change our situations, but I hate to hear the struggles you’ve been dealing with.
June 18, 2021 at 2:44 pm #30828
@ripple76 you mentioned that your brother and sister were coming out to celebrate your birthday. Has that happened yet?
I do feel very sorry that you are unable to attend your son’s wedding. What is the date for that? Do you have someone to stay with you while your wife is away for the wedding?
It sounds like you have led an exciting life in the Air Force. My dad was in the Marines and my husband, the Navy. Just like them I bet you have great stories from those days.
June 8, 2021 at 4:44 pm #30464
I am going on vacation next week to lay on the beach, eat good food and hopefully catch a hockey game (Go Tampa Bay). I have been doing a clinical trial for the last 6 weeks and still have 6 weeks to go, but I get a 5 day reprieve from it (have to make the days up, but still).
June 9, 2021 at 12:07 pm #30471
Hi @kgrady69, so happy to see you posting an update. YOu are so positive and bring much hope to all reading.
I love your vacation plans: Beach air, water, good food, all the good things to enjoy. Plus, adding in that hockey game will make it even more special for you.
Wow, I did not know that that allows that you to take reprieve in a CT. I am guessing it would depend on the person and what the CT involved.
Is that been going well for you the past 6 weeks? You are halfway there; great job!
We look forward to your update after that beach trip. Enjoy each second as I know you will.
June 9, 2021 at 12:12 pm #30472
Normal CT I would expect no time off, but this is a diet and exercise one and they have to watch me exercise. So I get time off from the exercise, but have to make up the days.
June 9, 2021 at 12:31 pm #30478
Hey @kgrady69, thanks for that explanation. That is an interesting CT. My daughter is a Dietician, so she schools me on diet, LOL.
Do you go daily or a few times per week to exercise? Or, is this at home via Zoom or something. I know some CT you talk about, so only offer information that you are comfortable with.
Enjoy the beach trip.
June 9, 2021 at 12:53 pm #30479
I am on the Mediterranean diet and I exercise for an hour each day. I have a treadmill and they watch me via zoom and increase my speed etc… I wear an oxygen monitor and Heart rate monitor.
You could either use a treadmill or an exercise bike, and as I sit for work each day I chose the treadmill. I opted to buy my treadmill, but you could go to the hospital to workout as well. Up until now everyone had to go to the hospital to exercise, due to covid though they decided to try it from home, so I am actually their first person to workout from home. I would not be able to participate if I had to drive to the hospital everyday, as you have to commit to a certain time every day. I opted to workout after work so M-F from 6:30-7:30pm I am huffing and puffing away on my treadmill.
I have to admit up until this I really did not exercise and when they told me I had to walk for an hour straight I thought there is no way, but they do all this testing before had and figure out what my heart rate needs to be and started me out where it was actually manageable. I sort of look forward to it LOL which I would have never said before. Having them watch me and talk me through it has made it easier. Just walking for an hour can get boring but they make it easy.
Happy to share any info on it.
June 9, 2021 at 9:35 pm #30491
@kgrady69 thank you so much for sharing this new experience with us and offering to provide more information about it. There have been some positive things that have come out of the pandemic experience and this would be an example of one.
I think this option is awesome and I wish you the best as you continue to use it!
June 11, 2021 at 10:32 am #30501
That is very interesting, @kgrady69. I eat healthier most days. I use many foods from the Mediterranean diet, but on weekends when my hubby is home, we often splurge/binge. We will eat what we are craving. This week I am craving a steak, and I rarely eat red meat. When I do, I want a good burger or steak. But I often have steak with veggies roasted and a salad or sweet potato. Now and then, a baked potato.
I appreciate you sharing the details a bit more. So, you started walking less, building up to an hour? I love this approach and again, thank you for participating in this CT. Will you share with us the final results after your last 6 weeks? Thanks again.
June 11, 2021 at 12:11 pm #30513
I wish they had started me out slow…no day one I walked for an hour. I did three days of testing before I started, so they had figured out what my maximum HR should be and for how long. I literally went from never exercising to an hour a day 5 days a week. When I started I thought they were crazy and I would for sure not be able to do it, but by the end of week one I could not even meet my target HR as by body adjusted to the exercising really quickly.
I eat red meat probably once a week, but no potatoes, junk food or baked goods.
June 14, 2021 at 10:55 am #30735
Wow, Kathleen! Starting from zero to one hour is huge and must have been exhausting for the first few days. I can imagine that you see a difference now, 6 weeks later. Do you notice you are not struggling with your breathing as much while walking?
That is such an exceptional accomplishment; I have to say. I love you shared this with us. I have an e-bike that I started just before I contracted COVID, and so ready to get back to that a few times per week.
June 8, 2021 at 10:35 pm #30466Steve StiffelmanParticipant
I would like to apologize for being such a very limited user. With PAH, Scleroderma and other medical issues, I am busy most months with appointments. I will turn 69 on June 27. After 3 weeks in the hospital in April, I was discharged oxygen dependent. I am currently getting pulmonary rehabilitation 2 times a week. It is really helping out. I need a tooth pulled this month, eye and hernia surgery and dermatology issues. Appointments often seem like my social life. On the bright side we had two grand baby’s I the last 4 months. I am blessed with the best medical team ever and a very caring family. I am looking forward to my birthday and hope that I don’t seem all gloom and doom. I hope to be more sharing in the future forum.
June 9, 2021 at 9:12 pm #30488
@steves there will never be any pressure to share here. We understand that some members prefer to just follow the forums or sometimes life just gets too busy and reading the posts is all there is time for.
It is nice to hear from you! I wish you the best as your birthday gets closer and congratulations on the precious new additions to your family.
It sounds like you have been through a lot over the past few months and have had much to adjust to. We are happy to support you through the good times and the bad so never hesitate to share both experiences.
June 9, 2021 at 12:14 pm #30473
Hi @steves, no need to apologize here. We certainly can understand a bust medical life, LOL.
PH is enough, then added other medical issues complicate matters more.
Aww, Happy early 69th birthday on June 27. That is my later FIL’s birthday, too.
You have been really busy. I am happy that pulmonary rehab is helping you some. Wow, 2 new grandbabies! That is so exciting; how many other grandkids do you have?
Despite your struggles and busy medical life, I am happy to see that you have a positive attitude. That helps take us far! That and an excellent medical team that you love and your caring family. Oh no, certainly no gloom and doom, you are always welcome here, with all of your thoughts.
I look forward to hearing from you more often in between your busy schedule and life.
June 9, 2021 at 6:14 pm #30484Steve StiffelmanParticipant
We have two older grandchildren ages 9 and 6. They are amazing kids and live near us. I saw the eye doctor and I got a great report. 1 eye down and 1 to go.
June 11, 2021 at 10:37 am #30502
Awesome, @steves; I bet the older grandkids are enjoying the new babies. I am happy to hear about your good report from the eye doctor. I hope that that is the same for the next one.
Next week, I will be going with my hubby as he has to evaluate for cataract surgery. He has had it for a few years, but it is worsening. This appointment was pushed back due to COVID. I am hoping that this may help the migraines that he has been having.
Thanks for sharing, and feel free to pop in and share anytime. We are here to support you.
June 10, 2021 at 2:25 pm #30495
I had my first get together in well over a year last week. A lovely group of women of all ages. Great food and conversation. All but one is fully vaccinated. We sat on the patio and enjoyed beautiful Summer weather I find that I feel better overall when I’m social and surrounded by positive people. My friends understand my disease and are great when my energy is iffy. Another attendee has MS and we support her too. I’m planning a July 4th bbq next.
I was diagnosed a few years ago and my Sildenafil and Opsumit have helped me manage my PAH well. I have a very good, balanced low sodium diet and stay as active as possible I do have days when I just can’t do the latter as we all experience, don’t we?
I’ve also made sure to catch up on all the health screenings I put off during last years lockdowns. I encourage everyone to do the same if you haven’t done so already.
I hope your enjoying Summer, staying strong, positive and resolved to do the best you can every day
June 10, 2021 at 3:25 pm #30496
@jeanl I can just imagine how wonderful it felt gathering with good friends again. It sounds like as far as friends go you really struck gold. We all need a support system like you have.
I am fully vaccinated now and have been thinking about calling on a friend who have been anxious to see. Hopefully sometime soon I will brave socializing, at least on a small level again.
I applaud you for all the effort you put into staying well. Including catching up on appointments. I am doing the same. In fact, I had an eye appointment and finally have much needed new glasses ordered!
June 11, 2021 at 10:45 am #30503
Hi @jeanl, I am happy to hear about this summer gathering. That must have been awesome. It sounds like y’all did enjoy it and ready to do it again next month.
I want to jump in and join you ladies, hehe. Everyone would benefit from something like this after being isolated for so long.
Your Opsumit and sildenafil are helping, and that is wonderful, too. That certainly all helps when dealing with something like PH. How often do you see your PH team being you are doing well on this treatment plan?
I have been trying to catch up on a few routine visits. I am where my insurance covers 100%, so hoping to get several tests and check-ups in before the end of the year. WTG, on doing well to manage your PH, social life, and these often pesky but important visits. Thank you for sharing. I feel like this is a “Feel Good Friday” type of post.
June 18, 2021 at 1:08 pm #30825
I have also started lifting weights again. I was a gym rat for most of my adult life and find it’s helping me stay focused and positive. I do what my energy allows Too stubborn to let this disease control my life
Yes, we are social animals and having that interaction is key to best health, I think
June 18, 2021 at 2:42 pm #30827
Hi Jean, I am so happy that you are lifting some again. My daughter is a workout fanatic, my Dietician, LOL.
She did weight lifting competitions a few times during high school and right after. She is now into Jujitsu and running more. But she is healthy.
Please do take it slow. Listen to your body, but I agree do not let PH take control of your life; I love that attitude. But I know lifting is important to you, so this is a win in many ways. My daughter says it is a huge stress reliever for her. Stay hydrated.
June 16, 2021 at 3:23 pm #30794
We limited the amount of time driving to 7 hours max.
I actually did pretty well with it.
I did experience swelling but nothing more than my usual.
It was really nice to get out of the house and be on the road.
I hope this becomes something that I can do more often.
At the end of the day it was well worth the trip and well worth the work involved getting ready for the trip.
@clydedodge I am thinking about you today. Wishing you a speedy recovery.
@ripple76 thank you so much for your service and happy birthday to you.
@kgrady69 we are huge Avalanche fans.
Hope you were able to catch a game.
I admire the strength it must take to commit to the exercise you are doing. Good for you.
Happy birthday @steves and congratulations on the grandbabies!
June 16, 2021 at 3:37 pm #30795
The avalanche are a great team and even though I had Vegas to win the series in my bracket, I did it more because I like Vegas LOL. I really thought they were going to win the series. It was truly a battle of the goalies. As for the exercise I have the CT people watching me everyday, so I have no choice. Trust me I am not that dedicated to exercise 😀
June 17, 2021 at 4:15 pm #30805
Yay @s-steppins! I’m so happy to hear that the trip went well for you. I’m not surprised that you experienced more swelling than usual, that happens to me during long road trips and I don’t have PH. It was wise to stick to 7 hours and hopefully stopped in between to stretch a little.
Now that you know how to make those trips manageable hopefully you can venture out more! When you do, tell us about them!
June 18, 2021 at 12:48 pm #30824
Feel free to join us here in Colorado 😇
My treatment plan is so helpful that I won’t need another right heart cath for three years if I continue as I am now. I have PH Clinic every other month though that was cut back last year along with everything else in my life. Last months results were excellent I could not feel more blessed
June 18, 2021 at 2:46 pm #30829
June 18, 2021 at 2:52 pm #30831
Awesome update, Jean! I hope that you continue doing so well. I am so happy that you have improved some and only need an RHC every 3 years. Keep us posted on what you are busy doing in your free time.
It sounds like you are a social butterfly. Enjoy, and I look forward to learning more about you and your journey.
I did not realize that you, too, are in Colorado. How do y’all do with the altitude there? My PH doc told me not to fly to Denver airport because of the altitude there. My daughter is there now, and her dad went out to visit a few days last month because I could not go.
I have a feeling that I will end up visiting there one day in the future.
June 18, 2021 at 2:47 pm #30830
Aww, Susi, that is so awesome. I know how worried you were about preparing for that trip. It sounds like a fun trip.
Did you get the travel trailer so that you are ready for the next one?
The extra swelling I notice after a 3-hour road trip. I do tend to put my feet up on the dash at tines. Other times, Manny, my hubby has me rest in the back seat. But, Often, I am stubborn as I want to see.
Traveling drains me fast and the extra swelling but, I enjoy short road trips. I am hoping to have a flight later this summer. I am pumped up about that. It’s always worth it. I tend to pay for it a few days more when driving long trips.
June 18, 2021 at 2:34 pm #30826
June 18, 2021 at 2:54 pm #30832
Yes, Clyde, was that gallbladder surgery done on Wednesday, as I was thinking? How are you feeling? Let us know if and how we can support you.
June 18, 2021 at 3:07 pm #30834
They decided not worth the risk. I had heart failure in August 2020 and cardiologist said not yet. If gets worse, maybe……
June 18, 2021 at 3:13 pm #30835
Oh, no, Clyde, that was a bit last minute for them to decide. But it makes sense. Are you having a lot of pain with your GB?
June 18, 2021 at 3:54 pm #30838
If I am careful with diet I’m good. But I like fried fish. Life is hard enough without fried fish😄
June 18, 2021 at 3:58 pm #30839
June 18, 2021 at 6:27 pm #30843
Oh, I was born in Alabama, @clydedodge. My parents live in Mississippi, so fried catfish at the fish house is something I always look forward to when we visit. So, I feel that pain.
It does sound like you are trying hard with your diet. I hope that this will continue and you won’t have any issues with your gallbladder.
Have you tried using a light cornmeal batter and an air fryer? Not the same, but we have an air fryer, and when I want fried things like wings, I cook them in there. I actually prefer my wings, “naked” now. They come out so crispy.
Keep us posted. I will keep you in my thoughts.
June 18, 2021 at 6:04 pm #30841
I was more worried about waking up from anesthesia than I realized. When they said no, I was relieved. No real medical issues with it. It is a pain thing. If I eat right I can go years with no issues.
June 18, 2021 at 6:30 pm #30844
Hey @clydedodge, yes, the anesthesia part would make me a bit nervous, too. I know most PH patients who are stable and need surgery with anesthesia; their PH team is involved, too. Of course, it all depends on each patient and doctor.
Take care, and let’s hope it doesn’t give you any issues.
June 18, 2021 at 6:10 pm #30842Randolph ReynoldsParticipant
In answer to your questions My brother and sister arrive from Alabama on the 26th, my birthday is the 29th of June. They have to return on that day so we celebrate my 80th on that weekend. As for my son’s wedding, my wife will be out in the Bay Area from the 27th to the 31st of August. I will have no one staying with me. As for cooking we have a neighbor who has volunteered to help. If I run into trouble, can’t think what that may be, I have friends who will be around.
This June forum has really generated a lot of inputs. I wonder if anyone else with PAH has been affected by the heat out west? It drains my energy more readily than normal.
As for war stories: Of course all of us do but we don’t share them with people unless they ask. Among my veteran friends we don’t talk about them as much now.
June 18, 2021 at 6:39 pm #30845
Hi @ripple76, I know that you are looking forward to seeing your family and celebrating your big 80th birthday. Please keep us updated after that.
I am happy to hear that you have neighbors to cook and friends if you need anything while your wife is gone.
Yes, you are correct; this heatwave along the Texas Gulf Coast has me zapped daily. I know this current heatwave is affecting so many areas. It is hell on the breathing. Are you staying hydrated?
You mention war stories and not talking about them much anymore. I recently read a book, The Body Keeps The Score. It’s is about trauma. It starts off talking about veterans and their struggles. It was very well written and opens our eyes to so much trauma that others deal with.
Take care of yourself, and please keep updated.
July 26, 2021 at 11:09 am #31217
@ripple76 been thinking of you and just wanted to check-in. How was your birthday and visit with your siblings?
July 26, 2021 at 6:06 pm #31220
@ripple76 asked me to post his response while we work out some technical difficulties.
Thanks Colleen for thinking of me. My brother and sister made all the difference in celebrating my eightieth. A splendid visit but I now feel as if I had crossed into a new era. In addition to the country’s new challenges starting the ninth decade I hope to see things improve in the next year or so. That is one of my goals. Diagnosed with PAH seven years ago I keep going. I met a fellow, at church, who just two months ago was diagnosed with PAH but hasn’t seen the specialist yet. He is struggling. I mentioned these forums but it is probably too early for him to get conversant. I keep a routine in the mornings to energize me. Some days are better than others as we all know.
July 26, 2021 at 6:11 pm #31221
@ripple76 I bet it was so nice having your brother and sister with you as you celebrated your eightieth! I’m really happy to hear how they made this special milestone special for you.
If you would like, pass the following on to you friend. We have MANY members who prefer to just peruse the forums and not comment on or post topics of their own. That is absolutely fine to do. We are here to help, not make anyone feel pressured. Then of course, if there comes a day when they would like to share something or ask a question, they will be more than welcome to.
July 27, 2021 at 11:34 am #31233
Hi @ripple76, I am so happy to hear how you enjoyed your siblings’ visit for your special birthday. That must have boosted you a bit.
I am sorry that you are having some technical difficulties posting. Thanks, @colleensteele, for posting for him.
I am thankful that you mentioned to your new friend about joining the forums. Coleen offers such helpful tips to share with him. WE look forward to meeting him, too.
In the meantime, please know that we worry about you and care about you. We hope that you will update us periodically.
July 27, 2021 at 12:02 pm #31238
July 27, 2021 at 11:36 am #31234
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