Viewing 23 reply threads
  • Author
    Posts
    • #32879
      Colleen Steele
      Keymaster

      I don’t know about you, but sometimes I feel a little down after ringing in the new year. The joy of the holiday slowly dwindles as people resume their normal activity. It gets dark early and depending where you live the weather might not be so great either. For those who make resolutions there can also be the feeling of pressure to live up to them.

      So, how are you doing? What is helping you get through the first week of the new year?

    • #32881
      Roger Bliss
      Participant

      I must say the holidays were kind of screwed up for us. Weather prevented us from visiting the “kids” in OR for Christmas. Our good friends in Canada were trying to make it down for New Years, but still haven’t left due to cold weather and their daughter and sil, who are driving them have covid. We spent Christmas with a couple of friends at the park. RV park had a dance for New Years eve, but we passed on it and stayed home. I see that one person who went was found positive for covid so far…..guess it was good we stayed home.

      Meanwhile in Alaska they were hit with one of the worst storms people can remember. It was below zero with 40-50 MPH winds with gusts up t0 90. Our house was without power for 3 days. Doesn’t take long for a house to freeze up in those temperatures. Lucky I have good neighbors. They got my generator running and kept feed it with gas till the power went back on. A tree fell on the power line going to the my shop. It doesn’t much matter as I shut the power off to my shop. I have underground going to my house, so that was ok.

      Got tired of getting my lung drained every month. Got a tube put in today so I can drain it myself. So far so good on that.

      So far all the things that have happened were things I couldn’t control. I learned a long time ago you can’t let things like that bother you too much……Yeah I know easier said than done.

      Here is a link to an article about the storm. It has some good pictures of the destruction

      https://www.adn.com/alaska-news/weather/2022/01/03/powerful-winds-cause-chaos-and-destruction-in-matanuska-valley/

       

      • #32883
        Jen Cueva
        Keymaster

        Oh no, @wheeldog, that sounds like a massive winter storm. Thanks for sharing the link to read about it in more detail. I’m thankful that you have excellent neighbors who kept your generator running, so things didn’t freeze up in your house.

        Yeah, the weather has been a bit dreary the past several weeks here and worldwide. That’s too bad that you and Mary Ellen didn’t get to see your kids in OR.

        Yep, this variant of COVID is spreading rapidly and a bit scary. We also declined invites from Christmas and NYE gatherings.

        How are you doing a day after your drain was placed?

        Your wise words hold true, but easier said than done. That’s especially true when so much is happening that we cannot control.

        I’m sorry that your Christmas and the new year have been screwed up. I hope that you and Mary Ellen can get outdoors at least and enjoy some warm air. With all the activities you usually look forward to doing, I’m sure that’s a bit frustrating—cheers to better days ahead, my PHriend.

        • #32906
          Roger Bliss
          Participant

          I am doing ok today. Naturally, I screwed up a little. Stopped for fuel and without thinking about it, I went in the store and got a 2.5 gal jug of DEF. As soon as I picked it up I knew I did a dumb thing. ME showed up on the way back to the truck and carried it the rest of the way. I started bleeding a little. I wasn’t to pick up anything for a few days so my stitches don’t pull out.

          My extremely unscientific opinion of this omicron is that there are 2 kinds of people…….those that have had it and those that are going to get it. I don’t see a way out, unless you already had covid. I don’t necessarily think it’s a bad thing to catch omicron as you will get natural immunity. So far it has been mild. However, Delta is come bad stuff…..hopefully it will go away.

        • #32922
          Jen Cueva
          Keymaster

          Oh no, @wheeldog! But, I can picture that because it’s YOU! Please don’t lift anything and mess up those stitches as you heal. You should recover pretty quickly.

          I can only hope that your thoughts on Omnicron are true. Because Manny and I both had a rough go with COVID in 2020. Unfortunately, I know a few who have had both. The only positive is, for the most part, the symptoms I have heard have been milder with Omnicron and whatever other variants are out there. But for those of us with PH and compromised immunity.

          Stay safe – shall I call Mary Ellen and have her tie you down a few days, so the stitches heal?

      • #32896
        Colleen Steele
        Keymaster

        Oh man, @wheeldog that was one heck of a storm. I couldn’t get over the pictures. Thank God you are safe and have such wonderful neighbors who look out for you and your wife.

        Not that we ever really got control of Covid, but it does seem like it’s turned into another tornado. So many people I know have caught this new variant. It’s a shame your holiday plans got messed up but it sounds like you dodged some bullets in the process.

        I didn’t know there is an option to have a tube placed so you can drain your lung at home. Are you handling that ok? Must be better than having to go to the hospital to have it done. How do you know when you need to do it? Just curious.

        Happy New Year!

        • #32907
          Roger Bliss
          Participant

          I didn’t know it was possible to get a tube in either till last month when I got my lung drained at UCSD. They told me about it. I always joked with my buddies back home that I needed a faucet installed so I can drain it myself.LOL To be accurate about this deal, and just so readers understand, the tube isn’t actually “in my lung”. The fluid gathers between the sack around the lung and my lung. It pushes the lung up and makes it smaller. The smaller it gets, the harder it gets to breathe. This condition has more to do with my cancer and I don’t think it has much to do with PH.

          Doesn’t matter when I do it. Either fluid will come out or it won’t. They only took 2.5ml out yesterday. I am going to give it a try in 2 weeks and see what happens. I have a link you can check out as I know you write a lot of medical articles. I only needed a local to get it done….not much pain involved. The prep takes quite a bit of time, but the actual insertion of the tube took maybe 10 to 15min. I think they booted ME out of the room for about an half hour.

          Those people at UCSD are at the cutting edge of technology. They are totally amazing. I would recommend them with any serious disease.

          https://www.mskcc.org/cancer-care/patient-education/about-your-pleurx-drainage-catheter

        • #32924
          Jen Cueva
          Keymaster

          I’m happy to hear your experience at UCSD is the same level of care that I have always received there. Your link was quite educational for me, too. Thanks for sharing.

          Now, don’t be acting like your usual. Take it easy and allow this to heal properly. When you drain it and how much fluid you remove, will you let us know when you drain it? This will be interesting since you can do it whenever.

        • #32937
          Roger Bliss
          Participant

          Got lots of help around here to help with the lifting. ME is keeping me on a short leash. The guy next door helped with taking the camper off the truck and moving propane bottles around. I just supervised.

          Been getting phone calls from folks at the hospital that keep changing the “drain plan” so I am getting mixed signals. Now they want it more frequent. Supposed to have a video appointment next Monday where the doctor will check the “installment” and supervise the first draining. They don’t want me to do it so trained ME to handle it.

          I was also informed that the “draining kit’s” can be hard to get, like many other products. I want to make sure I don’t do it too much and run out. I’ll let you know after my video visit how it went.

        • #32939
          Jen Cueva
          Keymaster

          Hey @wheeldog, I am happy to hear that you have plenty of help with any lifting. You made me crack up as I read, “ME is keeping me on the short leash.”- LOL

          THat’s frustrating with the mixed signals. I know that you will figure this out more after the video visit on Monday. I can also understand your concern about running low on the drain kits. Make sure that you remind them of that tip they informed you about.

          Enjoy your weekend and no lifting!

        • #32966
          Colleen Steele
          Keymaster

          @wheeldog I’m sorry you are going through this but I do find this interesting. Thank you for sharing your lung draining as you experience it and for sharing the link. I do hope you don’t run into supply and demand issues. Please keep us updated on your progress.

          If you don’t mind my asking, other than the drainage issue, how are you doing in regard to the cancer?

        • #32969
          Roger Bliss
          Participant

          Did my first draining here in the “tin tent” today. There is a good video that has step by step instructions on how to do it.  We kept starting and stopping the video as we went through each step. There was a nurse on a video call that watched the whole time. Everything went well and the nurse took off. All we had left to do was put on the dressing. That got pretty screwed up. Can’t buy the type of dressing used in a drug store. Had to redo it a couple times. Naturally it didn’t stick well. Sealed everything up with duct tape. “Red Green” would have been proud…..ever watch that show?

          Got an appointment with the oncologist the 27th. He was talking about some type of infusion.  Not sure why I need it as my blood numbers are so close to normal. They figure the fluid is caused by the cancer……BUT……the fluid goes down every month when I get it drained. So far the cancer drugs we have tried caused more harm than good…….they caused the fluid levels to go up. Won’t know for sure whats going on with the cancer till after the 27th.

        • #32974
          Jen Cueva
          Keymaster

          Hi @wheeldog, I’m grateful that you made it through the first draining. It sounds like the instructional video was beneficial for you and Mary Ellen to watch to get the steps down.

          How much fluid did you drain?

          I haven’t heard of that show but looked it up. I read that Red Green is a Canadian version of our Home Improvement sitcom that was famous. Most households knew of Tim the Tool Man. Have you seen that sitcom?

          Are the dressings provided to you, too? Many of those dressings are pretty sticky and take a few times o get them down. But it sounds like you got it for now.

          For you, this sounds like the pros vs. the cons, with your experience of cancer treatments in the past. The oncologist could decide against the infusions with your numbers being good. I would undoubtedly hear what they say and why. Ask all of the crucial questions.

          We hope that the appointment on the 27th goes well and you will update us then. Until then, stay safe, and let us know how we can best support you.

        • #32987
          Roger Bliss
          Participant

          We got 250ml out yesterday. Got 250 ML when they drained it last Wednesday. I assume since I was laying on my side when they drained it they didn’t get it all. I usually am sitting up.

          Red Green was a comedy show and his main way to fix things was duct tape. They usually did a skit every week of some goofy and new way to use duct tape.

          Everything comes in the “kit”, including the dressing. Should have watched how to put the dressing on, before we actual did it.

           

        • #32989
          Colleen Steele
          Keymaster

          Hi @wheeldog.I chatted with someone in our columns department about how you are doing the lung draining from home and asked if this would be something I can write about. I was told definitely and it would be great to write about it from the angle of someone who is going through it.

          I was wondering if I can email you some questions and make use of what you have shared in the forums to use in a future column? This is a topic that will be educational and helpful to many people.

          If you are willing to do an interview via email should I use the email address you gave me for “30 Days of PH”?

        • #33004
          Roger Bliss
          Participant

          Sure, ask away. Same email as before. This is the video we use, if anyone is interested. It is the same for both abdomen and lung.

        • #33014
          Jen Cueva
          Keymaster

          Excellent, @wheeldog, I know many will be grateful for this information in case they need this in the future. One late PHriend was going to the hospital each week to drain her abdomen. This was about 5 years ago; she was seen at UCLA.

          I look forward to reading the column when Colleen writes it.

        • #33018
          Colleen Steele
          Keymaster

          @wheeldog thank you so much! I’ll give you a little more time to adjust to the new routine and gather more experience with it that you can share. I will gather some questions together and will give you a heads up when I email them to you.

        • #33021
          Roger Bliss
          Participant

          Sounds good. I probably won’t drain for a couple weeks. It takes a few days for my lung to get used to the new space. I did it too soon last time, before I was completely recovered from when they put it in.

          Pharmacy still hasn’t gotten with me. I only have 3 drain kits left……don’t want to run out in case I really need it.

        • #32999
          Jen Cueva
          Keymaster

          Hey @wheeldog, I agree that watching the video about applying the dressing beforehand would have helped. But now you know, and after a few times, you and Mary Ellen will have that down. As I mentioned, some of the dressing coverings can be tricky at first.

          That makes sense that you drained the same amount, but you were lying on your side versus flat. Did they always drain it while sitting? Did they suggest which position you are in when you drain it? n

          Red Green does sound like a funnier Home Improvement comedy. I need to check and see if I can watch a few episodes online. We could all use a bit more laughter.

          I love that @colleensteele thought of interviewing you for a column. Many PHers do have to have their lungs and abdomens drained at times. Excellent idea! I hope that you will do it. She’s always thinking of things to share and quick. I love that, Colleen!

        • #33013
          Roger Bliss
          Participant

          Oh we will figure it out. Wouldn’t have screwed up this time if we watched the whole video.

          When I go in just to get it drained I sit on the edge of the bed and lean on one of those food tables for the entire procedure. When they put the tube in I was laying on my side and I stayed that way for the entire procedure and draining. I sit up to get drained at home.

          I don’t know at what frequency of draining they feel is enough to get the tube and do it your self???? I was doing it every month. I assume a persons regular doctor would recommend them to Hillcrest Hospital. My UCSD oncologist recommended me there for the 1st drainage then they told me about the procedure.

        • #33027
          Jen Cueva
          Keymaster

          Hey @wheeldog, I believe that you will find the best timing and staining and dressing changes as you do more. Don’t be so hard on yourself. It takes time to adjust to new things for us all.

          Although they are in San Diego, home health offices are all over. If you have any questions and concerns about draining, maybe they will send a home health nurse to you there in AZ. This would be helpful if you are curious if it’s healing, OK if you need help with it when draining. This may be an option, so you don’t have to drive back to UCSD. I would think the next time you plan to drain it, that would be an excellent time to have the home health nurse visit, and she can answer those questions for you.

          Patients who live far from the clinics do this often for various teachings, post procedures, and treatments. Would this be helpful for you and Mary Ellen?

        • #33043
          Roger Bliss
          Participant

          I’m not being too hard on myself. We will get it right next time. I am going back to SD for a checkup at the end of Jan or the first part of Feb. Going to work an appointment in while I am there for my oncology checkup.

          If I have any problems. I can talk to a nurse 24/7 that’s on their team. I don’t think many medical people know much about the drainage procedure. I need to get an x-ray to make sure everything is staying in the right place.

        • #33047
          Jen Cueva
          Keymaster

          Hey @wheeldog, I do not doubt that you and Mary Ellen will get it done better next time. Scheduling that follow-up appointment with your oncologist while in SD sounds like a terrific idea.

          Yep, unless they have experience with that drainage system, you are correct; they may not know much. You can teach them. When is your X-ray scheduled?

          Take care, and know that we are here for support. How are things going at the campsite? Any slow down on COVID there?

        • #33113
          Jen Cueva
          Keymaster

          Hey @wheeldog, I wanted to check-in and see how you are doing this week. I hope things are improving and you are enjoying the warm Arizona air a bit more.

          How’s the insertion site from your drain procedure? Is all healing well?

        • #33128
          Roger Bliss
          Participant

          The jury is still out on how this thing is doing. It made me a little more short of breath than before. We spent the last 4 days and 3 nights between 4,000 and 5,000 ft elevation. It made me more short of breath, but I could function and my oxygen levels were in the 90’s’. The weird thing is somehow about a cup of my lung fluid came out of the hole in my side……not the tube. Not sure what caused that?? We were in areas that didn’t have cell or reliable internet connections. I have been playing phone tag with the nurses at UCSD trying to figure it out. Gonna drain tomorrow and see what happens????

        • #33132
          Colleen Steele
          Keymaster

          @wheeldog that does sound odd. I hope the phone tag stops and you reach a nurse soon to discuss that. I’ll be anxious to hear an update when you are able.

          I haven’t emailed you questions yet for my column because I want to give you time to adjust to draining your lungs at home. I have been praying that it works out for you. How is the supply and dressing situation going?

        • #33155
          Roger Bliss
          Participant

          I probably won’t hear from them till Monday. They know about the leak problem as I left a message. If it was serious, they would have let me know.

          Found some gauze the right size, bandages etc that work. I use plastic wrap to cover everything. Still waiting on the pharmacy to call. I would call them, but don’t know which one. I’ll get it resolved when they call back.

          Wait on the email till I get everything resolved.

        • #33159
          Jen Cueva
          Keymaster

          Oh no, @wheeldog, that’s frustrating, but hopefully, you’ll hear from today if you haven’t yet. I wonder if it has anything to do with positioning, or the tube may have pulled out some and leaked around it.

          I’m happy that you were keeping an eye on your oxygen sats, and that didn’t drop too low. That increase in altitude would make me short of breathe. Are you back at the campground now?

          I’m sorry that you’re feeling more short of breath and the issues with leaking from your site. Were you in the tin tent or on your bike adventuring?

          Please keep us posted when you hear back. I’m hoping the tube hasn’t pulled out any.

        • #33178
          Roger Bliss
          Participant

          Still haven’t heard back. Called the more serious number tonight…..they will get a message to my doctor. Was able to send pics to the doctor to figure things out.

          We were in the tin “pup tent”…….got a camper on my truck we travel around in. Got back to the RV park Thursday night and headed to Yuma to visit friends Sat. Now we are back to the RV park and head to San Diego Wed.

        • #33175
          Colleen Steele
          Keymaster

          @wheeldog I hope you got answers today regarding the leakage. I was thinking about it over the weekend and concerned it could lead to infection. Take care of yourself and update us when you feel up to it and have the time.

        • #33179
          Roger Bliss
          Participant

          Yeah it is starting to get infected…..not bad yet. Got a call in to the doctor this afternoon. Hopefully he will get back quicker than the nurses. Going to SD soon and am trying to get an appointment.

        • #33191
          Jen Cueva
          Keymaster

          That’s not good, @wheeldog. I hope that the infection is just beginning and they can fix you up tomorrow in SD. Please know that we are thinking of you and hope you will update us once you find out more.

          Y’all stay safe on the road and in public.

        • #33202
          Roger Bliss
          Participant

          Got several phone calls about it today. Got some Doxycycline Monohydrate today, and an appointment to meet with the doctor Friday. Spent a lot of time without the dressing on today. Found out if I bend a certain way it leaks. It got a lot better leaving it out in the air to dry up.  Since the wound stayed moist from the leak it caused an infection. There is also a blockage in the line…….guess they are going to Roto-Rooter it out???

          I’ll let you know how things go.

        • #33210
          Colleen Steele
          Keymaster

          @wheeldog at least you are on Doxy now but I can’t believe the doctor isn’t having you seen before Friday. Having leakage and a blockage sounds like something I would think needs to be addressed sooner than later.

          I hope you don’t mind me sharing my concern. I’m anxious for Friday to roll around just so you can get this taken care of. I’m sorry this hasn’t gone as smoothly as you would have liked.

        • #33213
          Roger Bliss
          Participant

          Would have been tough getting in sooner…….not the doctors fault…..ours. We were in AZ and already planned to go to SD for my appointment with my oncologist on the 26th. So I had to scramble to get reservations for staying an extra day.

          They have pictures and know whats going on. I leave the dressing off quite a bit so it is exposed to the air and it is looking better.

        • #33214
          Carol Volckmann
          Participant

          Wheeldog you certainly have been dealt a pretty scary deal. I hope all goes really well for you Friday and the doctors can clear your blockage and stop the leakage! Don’t know if anyone has told you about the wound dressing called Aqua Cell Foam. It is totally waterproof, breathable (Don’t ask me how but it allows the area to breath while being waterproof) dressing so easy to put on and off without tearing up your skin. I started using it over my subQ site and could go swimming and now use it over my IV site.

          Sending you positive energy that Friday will really go your way – take very good care and I hope you and your wife will soon be on the roads again!

           

        • #33224
          Roger Bliss
          Participant

          Thanks for the dressing idea. Looked it up on Amazon…….think it’s something that would work for me.

        • #33233
          Carol Volckmann
          Participant

          Hey Wheeldog, good luck tomorrow. You have all wishing you good outcomes so do please keep us posted.

          If you are using Acredo/Express Scripts for your special pharmacy, you can get the wound dressing from them.

          Again, sending positive vibes your way!!

        • #33252
          Roger Bliss
          Participant

          Everything came out fine. The “fibrosis material” coming out is fairly normal. The infection wasn’t that bad and I need to continue with Doxy.

        • #33253
          Colleen Steele
          Keymaster

          @wheeldog thank you for taking the time to update us! All things considered that sounds like good news. Have a nice weekend.

        • #33263
          Jen Cueva
          Keymaster

          Hi @wheeldog, I’m grateful that you caught that infection early. It sounds like it wasn’t as bad as we had expected, but still sorry that you are dealing with this.

          Thanks for always updating us before and after your appointments. Have a great new week ahead as you work on finishing up the Doxy.

        • #33271
          Roger Bliss
          Participant

          I am suppose to see a Dr Yang at the PH center on the 16th. You know anything about her?

        • #33285
          Jen Cueva
          Keymaster

          Hey @wheeldog, I don’t know anyone offhand that sees Dr. Yang, but I also know they have added a few other specialists to the team there at UCSD. I see Dr. Poch. I’m grateful that they set that up for you. Will you keep us posted and let us know how you like her?

          How’s your infection as you finish up your DOXY?

        • #33293
          Roger Bliss
          Participant

          Will keep you updated.

          Changed the bandages today. Hasn’t been leaking and there is just a little redness where the tube comes out. Looking good!!! Have enough Doxy for another week or so.

        • #33299
          Colleen Steele
          Keymaster

          @wheeldog it sounds like things are headed in a better direction. Good to hear!

        • #33313
          Jen Cueva
          Keymaster

          Aww, so happy to hear that things are improving with the infection and leaking. Thanks for keeping us updated, my PHriend. Please don’t stop the DOXY until it’s finished; many are guilty f not completing the total dosage when they notice improvements. I’ve been guilty at times with this too. Have you?

        • #33356
          Colleen Steele
          Keymaster

          @wheeldog I just emailed you questions for the column. No rush in responding. I hope you are having a nice weekend and everything is going ok.

        • #33357
          Roger Bliss
          Participant

          Sent the answers back. Let me know if you got it ok.

        • #33358
          Colleen Steele
          Keymaster

          @wheeldog I received them. Thank you so much! I didn’t expect to receive a response so quickly.  I appreciate it!

        • #33385
          Colleen Steele
          Keymaster

          @wheeldog I just sent you another email regarding permission to quote you. I forgot to ask if there is a picture(s) you would like me to add to the column. Thank you!

        • #33388
          Roger Bliss
          Participant

          I have pictures that would work well if your goal was to make your readers barf.;-)

        • #33389
          Colleen Steele
          Keymaster

          LOL. I think the video links will be sufficient. No need for pics.

        • #33239
          Colleen Steele
          Keymaster

          @wheeldog that’s right. I keep forgetting your travel plans. You have always indicated that you are in good hands with your medical team. Good luck tomorrow! You will be in my prayers.

        • #33254
          Roger Bliss
          Participant

          When I told them about the problems with getting in touch with the nurse line, they to me to call the doctors office directly next time. They also gave me 4 more drainage kits, some tape, gauze patches and will get the ball rolling with the pharmacy.

        • #33255
          Colleen Steele
          Keymaster

          @wheeldog this is a perfect example of why it pays to speak up. I’m glad you mentioned the communication challenges. Really sounds like you have a good team and I’m glad they were able to help you before the weekend. I hate waiting through weekends to handle important medical concerns. I’ll probably email you questions over the weekend but no rush in answering them. Whenever you have time and feel like responding. I’m not placing a deadline on this.

        • #33257
          Carol Volckmann
          Participant

          Yeah Wheeldog! I am so relieved your team got right this when you arrived.  As Colleen said, you have to let your team know when things go sideways – especially when you have such critical issues going on. Very happy for you that your team is on it. This has to make you and your wife feel so much better.

        • #33265
          Jen Cueva
          Keymaster

          That’s excellent news and a great job at advocating, @wheeldog. This is an example of they don’t know; they can’t fix it. Thank you for sharing that, reminding us how vital communication challenges can be and speaking up.

        • #33220
          Jen Cueva
          Keymaster

          Oh no, @wheeldog, I’m so sorry that it is infected and leaking, both. But also that you have had such a difficult time getting in touch with that doctor’s office and this taken care of.

          I’m thankful they started DOXY but are waiting longer now to see them on Friday; I am a bit anxious for you, as Colleen. I’m guessing they’re thinking, “what’s one more day?” but it’s been going on for much longer than I would want.

          Please do keep us posted once you see them and they figure out this “Roto_rooter” plan and what you can do to prevent this from happening again.

          Y’all stay safe in your travels.

        • #33392
          Colleen Steele
          Keymaster

          @wheeldog I just emailed you 2 additional small questions for the column…more like clarifications. No more after that, I promise. Thank you! I appreciate your willingness to share a bit of your story!

    • #32884
      Jen Cueva
      Keymaster

      Hi @colleensteele, and thanks for another great question. The daylight goes by too fast, and once Manny gets home from work, it’s dark. When the time changes, I feel disappointed. Mostly because I was looking forward to enjoying some bike rides, he bought lights, but we haven’t tried those yet.

      But, on a positive note, our wet weather has stopped for now. The mornings and evenings are more relaxed, but it’s been sunny during the day for almost a week. On New Years Day, Manny and I ride our bikes along Hwy 101, the beach.

      I was hurting and exhausted afterward and stayed on the couch for a few days. But it was worth it.

      Getting outside when I can get in the fresh air boosts my mood, even 10 minutes. How about you? I know you all have had snow and ice with winds lately. Are you getting your fresh air time?

      I also enjoy getting on the forums and talking to everyone as I worry about everyone. It can be when some start going into depression this time of year. Is everyone doing alright with the winter weather and time, Colleen?

      I’m sending much love, hugs, and sunshine from San Diego.

      • #32897
        Colleen Steele
        Keymaster

        @jenc it’s been raining here since yesterday so all the snow is gone now. I love the snow but when the temps dropped the roads got really bad. Everyone welcomed the rain for that reason.

        I love how you and Manny go bike riding together. I haven’t been on a bike sine the boys were little. It’s such a great way to get exercise and enjoy some fresh air. Time flies, before you know it it will be staying lighter longer again and you will be out riding.

        I’m doing ok with the holiday’s being over but the darkness makes me so tired and it throws off my inspiration to get things done. Once it gets dark, even though it’s still early, I’m thinking it’s time to call it a day.

        • #32925
          Jen Cueva
          Keymaster

          Hehe, @colleensteele, your comment about calling it a day when it gets dark is relatable. It seems so late at times, and I look at the clock, and it’s barely 6 PM. You know the change of time messes with our circadian system. Have you experienced more headaches than usual? Manny has, and when I looked into it more last week, I came across this article.

          That snow and rain have been quite messy there and in many other places. Y’all have had your power on, right? Many have been without.

        • #33019
          Colleen Steele
          Keymaster

          @jenc that is really interesting! Yes, I have been getting more headaches than usual…in fact we all have. I never made the connection to the time change. Thank you for sharing the article! I love the random things we learn from each other in the forums.

        • #33033
          Jen Cueva
          Keymaster

          Hi @colleensteele, yes, I enjoy learning much from our forum members, you included. At times it is not related to PH but life in general, which we are all trying to do. Live each day as best we can, right?

        • #33041
          Colleen Steele
          Keymaster

          @jenc we often discuss here how we need doctor’s to treat the whole person. I like to see us practice what we preach by sharing more than just our PH experiences here in the forums. It’s a great way to remind each other that we are more than this darn disease.

        • #33048
          Jen Cueva
          Keymaster

          Well said, @colleensteele! I’ve always hoped that doctors would take us as a whole person into consideration. But many think of us as PH patients, which often leaves things unnoticed or disregarded when creating a treatment plan.

          Have you found this too, with a transplant? Unfortunately, I find this across many rare disease communities.

    • #32887
      Jen Cueva
      Keymaster

      This is the perfect time to check on a few of you that have crossed my mind the last few days. How are you doing, @ripple76, @carol-alexander, @dawnt, @traceyaustralianmigration-co-za, @mainegal, @valeriekv, @cdvol3gmail-com, @jim-sparrow, @kgrady69, and @barbarainmemphi?

      This is only a short list, so please share if I am comfortable if I didn’t tag you. WE are looking forward to hearing from you all.


      @mamabear007
      , are you hibernating for winter?

      • #32889
        Kathleen Grady
        Participant

        Awe thank you for checking in. My line exchange was eventful as always. The sedation did not work, so I was awake and alert. It was the same when I got my original line, so I was prepared LOL.

        Still having problems with the new line, is still bleeding (has decreased) and sore. Was just at the hospital today for a NP to do a check on it. They said everything is okay, and to just continue to watch it….Ah the joys of a Hickman line. Luckily I do not live far from my hospital, so it was a quick visit.

        I am just grateful everything was able to be done quickly and there were no major complications.

         

        • #32898
          Colleen Steele
          Keymaster

          @kgrady69 I had read on FB that it went well. I was relieved for you. Do you often have problems with sedation? I’ve known some people who don’t get sedation at all for line placements or heart caths because it has become too risky to give it to them. What I’ve heard is it’s not awful to experience pain wise but mentally it’s a bit challenging. Is that what it was like for you?

          Happy New Year and Happy New Line!

        • #32901
          Kathleen Grady
          Participant

          I have a high tolerance for any kind of drugs. So yes it happens a lot. I even woke up once during eye surgery (yuck)
          it was not too horrible pain wise, but since I actually thought the sedation would work it is challenging mentally.
          they gave me extra lidocaine, which after the burn works quite well. I am lucky that I go to a large hospital and they do these procedures all the time, so I was not there long.
          I really have no complaints as I know I am very lucky to have had my original line so long.
          hope you are doing well

        • #32904
          Colleen Steele
          Keymaster

          Doing well @kgrady69, thank you! It sounds like you are in really good hands and I’m so glad things turned out well for you. This was the first time you had to have the line replaced, correct? Now you know you can get through it if you have to deal with it again…in the FAR future.

        • #33114
          Jen Cueva
          Keymaster

          Hi @kgrady69, how is your new line doing? I wanted to let you know that you were on my mind. I hope that you are feeling better and keeping busy with other things.

        • #32926
          Jen Cueva
          Keymaster

          Aww, @kgrady69, I’m grateful to know that things well well with your line replacement. That must be painful. I have not had to deal with that, only a PICC line, etc., for short durations. I wasn’t sedated for those either. But I’m not sedated with my RHCs either, are you?

          Lidocaine at the site never seems to start working when they start, and often I do still feel much of these procedures.

          Being near a hospital that offers top-notch care is essential. Which hospital are you near? Is it a larger PH center?

        • #32930
          Kathleen Grady
          Participant

          I am never sedated for RHC either.

          I go to The Cleveland Clinic.

        • #32934
          Jen Cueva
          Keymaster

          My dentist always laughed and said I’m crazy, LOL. Yeah, I prefer an RHC any day over a dental procedure.

          You’re def in excellent hands at Cleveland Clinic. I know several PHriends who have been going to the PH center for years.

      • #32917
        Valerie
        Participant

        Hi, Jen!
        How are you doing? Did you have fun during the holidays?
        How many people have returned here! I am very happy about it! Although, of course, many have had adventures. But on holidays, something often happens! (Tracey, https://pulmonaryhypertensionnews.com/forums/members/traceyaustralianmigration-co-za /, your guests are just creepy! I even shuddered with disgust!)
        To be honest, I’m not really okay. I can’t see very well, although my eyes are fine. There was a problem with the optic nerve, obviously. I again get to research and articles about the relationship of PH with multiple sclerosis. These things are clearly related (in my case). Many people here on the forum also have an autoimmune disease (it is quite possible that this is also related to PH). It’s all so complicated! If each of us starts to study everything in detail, we can probably go crazy, right?
        I’m gathering the strength to go to some doctor.

        • #32927
          Jen Cueva
          Keymaster

          Ughh, @valeriekv, I’m so sorry to hear about your optic never issues. This concerns me as this is your eyes. Do you already have an appointment scheduled to have this checked?

          Yes, some holiday house guests can be challenging to deal with. It’s more complicated when it’s family, like @traceyaustralianmigration-co-za shares. Thank God they are out of her home.

          I’m doing pretty good, thanks for asking. The only struggle I am dealing with is getting my electrolytes more stabilized. No biggie, as my late Pawpaw would say. 😀

          Thanks for checking in; I’m worried about your eye concerns. Yes, researching all of these added symptoms will drive you nuts.

    • #32888
      V.R. Peterson
      Participant

      I’m doing well, @jenc. This mixture of snow and rain is for the birds. It needs to decide which one it’s going to do and then just do it. We’ve got massive water puddles on our lawn where the rain has melted the snow.

      • #32899
        Colleen Steele
        Keymaster

        @mamabear007 I laughed when you mentioned the grass puddles. Perfect timing! I just came in from getting the mail. I walked across the line and ankle deep into a puddle. I had a few words for Mother Nature.

        Happy New Year to you and your family!

      • #32928
        Jen Cueva
        Keymaster

        Ughh, @mamabear007, I know that sounds miserable! I’m sorry and hope your weather will make up its mind soon.

        But I’m grateful that you are doing well. How are your son and DIL? Working and trying to keep safe, I’m sure. How old is he now? I bet I lost a few years. I tend to do that, although my age, losing a year or two is good, LOL.

        • #32932
          V.R. Peterson
          Participant

          Thank you @colleensteele and @jenc.

          My son and DIL are doing well. He’s busy playing catch up for the busy Christmas rush in the meat department, and she’s now going back to school to get her NP doctorate degree (in addition to working at her hospital). Neither one of them have much time to take a breather. Oh well, maybe in a few years.

        • #32938
          Jen Cueva
          Keymaster

          Hi @mamabear007, it sounds like both your son and DIL are busier than ever. Are they in their 20s? They say like KK and my SIL; they are in their late 20s. They never stop, but happy they are doing this all now as they are younger.

          I wish them both the best in 2022 with their busy schedules and fulfilling their dreams.

          Take care of yourself. Hopefully, you will have some calmer, not-so-mixed-up weather soon.

        • #32960
          V.R. Peterson
          Participant

          @jenc, in their early 30s.

        • #32972
          Jen Cueva
          Keymaster

          See there, @mamabear007; I did lose a few years. When I read your updates, I knew they were in that age bracket. My daughter is almost there, too, LOL.

          I hope that you are doing well. What have you been doing to keep busy lately? Are you still managing the PHA call line?

        • #32973
          V.R. Peterson
          Participant

          I don’t actually manage the support line. I’m just one of the many volunteers, and yes, this week is my one of my shifts.

        • #32975
          Jen Cueva
          Keymaster

          My apologies, @mamabear007. I guess I knew you had volunteered for years and thought you were now overseeing a team of other volunteers. Thank you for that clarification and your continued support to the PH community.

        • #32976
          V.R. Peterson
          Participant

          No problem @jenc. I’m just a cog in the wheel of people trying to help where we can.

           

        • #32978
          Jen Cueva
          Keymaster

          You’re making a difference, @mamabear007. Send them this way if they want to communicate with others in a forum setting. I know that those who get the chance to talk with you find it beneficial.

        • #32979
          V.R. Peterson
          Participant

          Thank you, @jenc. I will.

    • #32890
      Carol Volckmann
      Participant

      It has been really nasty here – High winds gusting around 40, rain, snow,  sleet, ice … all in all, our bikes have not been out since late Oct and probably won’t be till Spring 🌞. I have been a bit down lately, I guess feeling sorry for myself when I really don’t have a good reason. Dick and I were talking about how much we wanted to go sailing ⛵ one more time. We use charter out of St Thomas every other year but have missed 😢 going due to my health issues – with my Hickman line I cannot go swimming, the heat and humidity really get to me and now the additional issue of my ostomy just adds one more layer.

      Add that to our ages 77 and 83 handling a sailboat ( yet, for us it has always been like a 2nd home). I know so many like yourself who do so much better with many more issues than I have and just plow ahead. Yesterday I was supposed to have my heart MRI. After getting up at 5 am to catch the ferry to Seattle and Making it on time come to find out I had to reschedule due to a major screw-up by Radiology. From there everything else including labs was not correct. Today got our labs done and are now on our way home to rest! Rescheduled heart MRI for Feb.

      My dear friend, I feel I can vent here. I know I will come out of my funk, but right now I am comfortable enough to share within this forum. Thank you for listening – like you had a choice hehe. The sun just came out so all will be well. Lots of 2022 good news for you, Manny, and Sasha. Lots of hugs 🤗 and lots of Joy!

      • #32929
        Jen Cueva
        Keymaster

        Hi @cdvol3gmail-com, I’m so sorry that your post yesterday was messed up from copying and posting it here. Yes, that often triggers our system and acts goofy.

        You are always offering lovely support to all of us here. Please let us extend this same support to you during this funk season.

        It’s OK to feel this funk at times. Your long messed-up day sounds exhausting and frustrating. I’m sorry that they couldn’t get things right!

        The sadness of your sailboat charters is valid. COVID hasn’t helped anything as you have not seen the kids and grandkids in a long time. Age and health issues limit what we once enjoyed our time to grieve.

        Allow yourself that time. You are one strong woman who continues to push through anything life throws your way. You’re inspiring, my friend.

        During this funk season, let us love and support you. How can we best help you? Sunshine is always a plus to lift our moods.

    • #32892
      Randolph Reynolds
      Participant

      I’m still here even though 2022 started off like a Mad Hatter’s Tea Party.  My wife remains in a wheelchair.  My prayer is that when she next sees the Orthopedic Doctor her pelvis will have mended enough for her to get out of the darn wheel thing.  I was hit with infusion site pain only this time it is taking longer to calm down.  In short we are forcing through enemy lines.  Would be nice to see some breakthrough.

      Not post holiday blues more like “I hoped for a change.”  It is due to being in the old age bracket that I hear so much physical trouble that friends have.  We all try to put on a pleasant demeanor about it.  It isn’t saying much when I find reading the Wall Street Journal continues to reveal all the ‘bad stuff’ that is going on.  At least in this small town we are rather isolated from it.

      On every other Monday three of us gather for breakfast.  Our discussion begins with events in our lives then migrates to the state the nation.  I reckon that is common for retired fellows.  But this year we have a lot to discuss.  We think we ought to reach out to other men our age and form some sort of political action group.  The only resource would be social media.  So that is a possibility for 2022.  It is fun to think about.

      There you have it on January 7th.

      • #32903
        Colleen Steele
        Keymaster

        @ripple76 I couldn’t help but laugh at your Mad Hatter’s Tea Party comment. I’m sorry the description fits the start of your new year though. I’m praying for positive change for you and your wife before we get too far into the new year.

        I think a political action group sounds like a great way to let your feelings be known and perhaps inspire change. Just a heads up though, there is a lot of censoring on social media regarding political points of view. Facebook especially is frustrating in this regard. Maybe if it is set as a private group it won’t be an issue but I know when people post politically on their private walls it often gets taken down…depending on their opinion. I don’t know who decided what is ok to have an opinion on and what isn’t.

        Personally I avoid posting anything political but I respect those who have the courage to tackle the difficult topics. Good luck with it!

      • #32931
        Jen Cueva
        Keymaster

        I now want to have a tea party, @ripple76. Maybe our next Zoom call should be titled after this post, hehe.

        I’m sorry to hear about your wife not quite where you would have hoped. Praying her next visit is soon and will be positive.

        Your site pain is making me hurt. I hope that it simmers down at a tolerable level. Is it the site you have it in, by chance? I am not on infusion but hear many who have certain places that are more painful than others. You are subQ.

        An old guy’s political group may be a positive for you. You’re right; there’s so much to talk about. Change is needed, but I won’t go into that here. Like Colleen, I would check on FB for rules. I also saw something new on IG last night under each of my messages. All which were positive said something about COVID hate messages. None of the messages had anything to do with COVID, BTW.

        I’m sending you and your wife prayers that things will improve soon.

      • #33030
        Jen Cueva
        Keymaster

        Hey @ripple76, I’ve had you and your wife on my mind and wanted to check in. How are things going this week? Has your site pain eased some? How’s your wife healing?

        I’m sending you both extra hugs, love, and prayers this week.

    • #32893
      Carol Volckmann
      Participant

      Hi Randy, I do not remember if you have an IV Hickman Line or subcutaneous delivery. What really worked for me was to cover the site (either one) with an Aqua Cel Foam – totally water proof and it will help to keep your site from infections. For my IV site after cleaning the area I cover it with a bio-patch then an Aqua Cel Foam patch 4×4″. This has hoped me. I hope this would work for you too.  Good luck and I hope your wife will be out of that chair very soon!!!

    • #32894
      Tracey
      Participant

      Hi @jenc, I’ve had a rather busy start to the new year with a thousand things happening all at once..finally my sister, her insane husband and his revolting children have left. You probably think I’m being too harsh on them but example I gave Dan and El quite expensive t-shirts.  We were sitting around the dining table still unwrapping when El laid her shirt on the table and proceeded to cut the sleeves off. She doesn’t like sleeves. I was so astonished I actually didn’t know what to say. But they’re gone and my kiddos arrived this afternoon. You have never seen such excitement in Enzo and Billy,  I’ve never seen his tail wag like that. Theres no chance that Enzo is going to sleep with me tonight. But that’s ok I’ll be good enough for him again next week 🤣

      There is one thing that is really annoying me at the moment, and I shouldn’t let it, but I’m sick of people saying to me, oh I’m glad you’re well now. First my business partner, then my accountant, then my lawyer. They’ve all been friends with me for at least 20 years. They don’t see the cannula in my nose, or the puffing and panting just to get in and out of bed. There’s this expectation that I should be bouncing back into the office.

      I will have to shuffle into the office with my walker, don’t want to fall over during a dizzy spell, so that I can deal with my business partner who has now decided he doesn’t want to be my partner. He’s got this idea in his head as to the value of the business so he is making ridiculous demands around his exit. But you know I’ll be so hapoy when he’s gone and I know my stress level will drop so I’m trying to smooth things over. It’s hard work.
      That’s the start of 2022 for me. If I become the sole shareholder I will take more trips so it could be a good year.

      • #32902
        Colleen Steele
        Keymaster

        @traceyaustralianmigration-co-za you were on my mind today while I was out running errands. I was happy to log into the forums and read an update from you.

        I’m dumbfounded about El cutting the sleeves to the shirt right in front of you. Was that supposed to be some sort of a rude point she was making? Well, I hope you are enjoying the peace now that they are out of the house. And now your house is filled with love and happiness! That was great to read!

        But the “I’m glad you’re well now,” comments must be super frustrating! People just don’t get it. Cullen goes through a version of this too. People think his heart and lung transplant left him with no more medical challenges or concerns. They don’t see the fist full of pills he takes 2 times a day. They aren’t aware that all those meds put him in stage 3 kidney disease. They don’t realize how scary transplant statistics are and how much effort he puts into keeping himself well, and even then, he still has bad days.

        Just want you to know that I truly sympathize with the problem. Could your doctor write a letter to submit to your work so they have a better understanding of your medical situation and limitations?

    • #32933
      Jen Cueva
      Keymaster

      Wow, @traceyaustralianmigration-co-za, unbelievable and unacceptable, your story of El cutting those sleeves off! – Rude and a waste of your thoughts, time, and money.

      I’m so happy that you finally have them out of your home and hopefully less drama and stress.

      It’s frustrating that you hear those comments from others. I’m sorry and can understand and feel your pain with this. You don’t need to prove yourself. I’ve had family say, “glad; you’re well now.” I try to think they mean well. But it’s inconsiderate when you’re only “sick” if you’re in the hospital or halfway to the grave. How are you doing physically post-surgery? Recovery will take much time, and you’re far from well with your situation.

      The part of your message when the kids arrived made my heart happy. You needed this, my PHriend! Too funny about Enzo! You’ll have him back once they leave. Enjoy your time with them, and know we are here and hear you. Your complaints and concerns are valid.

      I’m sending you much hugs and love from San Diego. It sounds like your 2022 is getting rid of the stress in your life. That can be good for your overall health, right? Although, I know this is all frustrating.

    • #32936
      Carol Volckmann
      Participant

      Well, I am done with dealing with being in a funk over all the screw ups, new medical issues and the fact that I am limited not only because of my diseases but also my age! Done! (I hope…)

      Thank you Jen and Colleen your care and support and reading other posts from the forum has helped put issues in prospective. I am so grateful for all the positive things in my life. When I was told I had 3-5 years to live, I did power through that no believing what they said and found the right team – that was now 19 years ago! Ha!

      Yes, more medical issues come up as autoimmune disease has and will continue to raise more problems – we will deal with them and keep on going.

      Thank you for allowing me to vent – I was down and feeling sorry for myself and I guess needed to vent. Thank you for mentoring this forum and giving everyone a safe place. And … sharing your own stories here. BIG HUGS 🤗

       

       

      • #32992
        Colleen Steele
        Keymaster

        @cdvol3gmail-com I think we all have moments (short and long ones) when we feel sorry for ourselves, and that includes the caregivers. In my experience venting can be very healing and I hope that is how you feel when you share with us.

        Have you found anything you enjoy doing that helps take your mind off of your health struggles for at least a few moments a day? Have you ever worked on puzzles? It’s been a while since I’ve put one together but in the past, when the nights get longer, I would work them while listening to music or watching tv. Anyway, that is just something that came to mind.

        Hope to hear from you again soon!

        • #33020
          Carol Volckmann
          Participant

          Thank you Colleen for reaching out. You’re right, sometimes you need to vent. Sorta like the tea pot on the stove – if you don’t let the steam vent … oh my what a mess that would be.

          I am glad I went to the forum thanks to Jen’s suggestion. This forum is a safe and caring sounding board.

          As to puzzles, I am not very good beyond the boarder! I do like word scape, but what really does bring me out of a funk is Dick! We do that for each other. As a caregiver, he too has his moments as you can appreciate.

          Having more test so many doctor visits, scans and labs – so much fun haha!

          Now, when is this weather going to change. That alone has been a downer!

          Take very good care my friend and I am sending along a big hug 🤗❤.

        • #33032
          Jen Cueva
          Keymaster

          Ahh, @cdvol3gmail-com, I’m grateful that you did find the forum a place of comfort so you can vent. Please remember we are here anytime. We all have those funk days, as Colleen mentioned. You’re not alone.

          I love that you share that Dick brings you out of the funk. I find that Manny and I do the same for one another.

          The weather certainly plays its part. If I can get outside and get some fresh air, that boosts my mood. Sunshine is a bonus. Hopefully, you in WA will see some sunshine before long. I’ll try ad send you some. Hehe.

          I know then you can be outside and enjoy that new deck and maybe some bike rides as it warms a little. At least that’s things you can look forward to besides these medical appointments and procedures. – Big hugs.

        • #33115
          Jen Cueva
          Keymaster

          Hey @cdvol3gmail-com, I hope this week finds you having a better week. I know that you may be busy with appointments and such. But know that you are on my mind this morning. Did you learn anything more about your belly issues? Hopefully, you will get some answers and relief with that soon, my friend.

          – hugs and love from a cool SD this morning.

    • #32940
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, you are so sweet and kind. Your thoughtful words mean more than you know. But most importantly, I am glad that we could offer you some support here in the forum.

      You are right; you pushed through almost 19 years ago and will continue to go through. But, it’s also OK to vent, my friend. We all need to do that at times, and that’s why we are here. We support each other through the good and not-so-good days. This includes the seasons of funks. hehe

      I have to say it’s our empathic and loving members who make the forums.

      Thank you for sharing and allowing us the opportunity to support you through your funk. You got this!

      I’m sending you and everyone much love and hugs this weekend. Do something that makes you smile, whatever that may be.

    • #32945
      Valerie
      Participant

      Hi, Jen!

      It’s great that your holidays went well!

      Sorry to hear you’re trying to get your electrolytes back to normal. But PH patients are never absolutely fine, right?

      Yes, I had an appointment with an optometrist and a neurologist in December, and I’m going to visit them again soon. At the same time, I would like to get to a cardiologist and an ultrasound. So these are grand plans!

      Carol https://pulmonaryhypertensionnews.com/forums/members/cdvol3gmail-com / , your adventures are also grandiose! Your age has nothing to do with it, you are very cool for this age! And do not compare yourself with others, they have not experienced as much as you have experienced.  I bought a book by David D. Burns “Feeling Good. The New Mood Therapy” recently. It’s hard for me to read it yet, but it’s quite useful, I think. Have you read it? If you haven’t read this before, maybe it would be useful to you in moments of despair?

      • #32955
        Jen Cueva
        Keymaster

        Hi, @valeriekv, I’m happy you have already seen an optometrist. From your description, I think this may be something that the advanced training would make a difference. Did they refer you to an ophthalmologist, by chance?

        Your grand plans sound good. Hopefully, you feel well enough to get through those appointments and tests soon.

        I feel like my electrolytes are getting more my norm. I will redo labs next week. Yes, we are never fine- it seems like something is always lurking. But we do our best with what we are dealt with and persevere.

        The book suggestion to Carol sounds interesting. Did someone suggest it to you? Did you start it or wait for eye relief first?

      • #32961
        Carol Volckmann
        Participant

        Thank you Valerie for your encouragement. I will look up David Burns’ book. We find a way to push through the negative and sometimes it might take a bit of a push! Ha!

        I hope all your appointments give you relief that there are positive directions you can take. You have a great deal on your plate – you are in my thoughts and very best wishes.

        • #33022
          Valerie
          Participant

          Carol, thank you very much! I hope you get better, too.
          Jen, haha, I didn’t write it quite right, I guess. I was at an ophthalmologist’s appointment. An optometrist and an ophthalmologist are the same doctor here.
          I found out about the book on the Internet, managed to read a little and do a few exercises. For me, as for many patients with PH, this is a great help. Depression is waiting literally at every corner. I hope to be able to continue reading soon.
          I hope your tests will be fine. Good luck to you!

        • #33031
          Jen Cueva
          Keymaster

          Ahh, @valeriekv, thanks for that clarification. I’m happy to hear that you managed to read a little of the book. I haven’t yet checked it out. I’m currently finishing up one and reading another for our columnist book club. How are your eyes doing?

          I have a few on my reading wish list, but I often get distracted doing other things. Hehe.

        • #33061
          Valerie
          Participant

          Jen, my eyes are still fine. My brain still doesn’t really want my eyes to see well. I am continuing treatment and waiting for the opportunity to see a doctor. I think I will be swept by snow when I try to go to the doctor, lol. It’s cold here now and there’s A LOT of snow!
          I have the same situation with books as you do! There is a lot of this and all these are waiting in the wings!

        • #33065
          Jen Cueva
          Keymaster

          Aww, I got that connection now, @valeriekv. I misunderstood earlier. I’m sorry about the brain not wanting your eyes to see.

          Ughh, sorry about the snow struggles. I know some visits in person are needed. Do you think it will be clear enough to go, or would a virtual visit help at all?

          Do you have someone to clear the snow, so try to get out when you do?

          Yes, that ongoing book list expands, and I often forget if I don’t write them down. But I have so many others that I probably won’t miss it unless I hear the title again, hehe.

        • #33124
          Valerie
          Participant

          Jen, yes, my eyes and my brain can’t agree, unfortunately. It remains for me to be treated and hope for the best. As before, I sometimes study biochemistry a little. I am becoming more and more convinced that everything inside the human body is connected and it is unpredictable. And it’s very difficult.
          Oh, it’s impossible to clean all the snow on the road to the hospital! There’s too much snow for one person, lol. I’m drowning in snow on the way to the store even. And the doctors are in another city. It takes two hours to drive, now it’s a little scary. It’s been snowing for two months now, as if we’re in the movie “The Day After Tomorrow.” Therefore, I am now being treated with all my might on my own. My visits to the doctors always get into difficulties.

          January is coming to an end, does it end well for you?

          • This reply was modified 5 months, 1 week ago by Valerie.
        • #33133
          Colleen Steele
          Keymaster

          @valeriekv I’m worried about you after reading your update. It’s hard enough dealing with serious medical concerns to then have to stress over the weather and transportation. I’m very sorry.


          @brittany-foster
          was one of the original forum moderators here and I remember she often commented on how everything inside the body is connected and effects each other. It’s both amazing and scary.

          I’m thinking of you and wish we could help you more in some way.

        • #33136
          Valerie
          Participant

          Colleen, thank you for your support! You’re so kind! Unfortunately, we do not always choose a place of residence where there is easy access to medical care. You all help me all the time! Your words and the existence of the forum in general are a HUGE support. I hope you’re okay?

        • #33146
          Colleen Steele
          Keymaster

          @valeriekv we really do care about each other here. I’m doing ok and so is my family. Just trying to stay safe and well. Thank you for asking.

        • #33152
          Valerie
          Participant

          Colleen, that’s very nice to hear! I hope you will have many more happy moments this year. I’m trying to stay safe, too.

        • #33139
          Jen Cueva
          Keymaster

          Oh no, @valeriekv, I’m so sorry to hear about all of that snow and the issues it’s causing you. I can’t imagine! Shall I send a little San Diego sunshine your way o help melt it? Maybe by the month ends, you will have a break in the snow. When does it usually stop there?

          Is there anyone who can help you get to the store and the appointments nearby? There must be some type of service if you don’t have a friend or loved one near.

          I’ll send you the sunshine each day I see it- along with some extra warm hugs. Stay warm, cozy, and safe, my PHriend.

        • #33151
          Valerie
          Participant

          Jen, oh, that’s a great idea! A little sun from San Diego right now would be very welcome, lol. No one knows when the snow will end. But there is so much of it that it will melt in three to four months, I think (maybe sooner? My ultrasound doctor has been waiting for me for a long time).
          I don’t always drown in snow on my way to the store. Much more often, my mother goes to the store (before that, she cleans snow from the car for a long time). Is it difficult for you to imagine all this snow? It’s hard for me to imagine that you don’t have snow! Ah, sunny California!
          Thank you for your concern! I hope you will also be able to be in comfort and safety.

        • #33160
          Jen Cueva
          Keymaster

          Hi @valeriekv, wow, that is a ton of snow piling up! We lived outside of Chicago few years, so I’ve had my share of snow. It’s beautiful to look out from a window with a warm fire or cozy blanket. Getting out in it is another story. I was still working then and did home health, so I drove in it and had my share of cleaning it off of my car.

          Yep, I prefer the sunshine. But like you said, often we can’t choose our residence location. Have you always lived in that area?

          Stay warm and bundled up this week. The sun is out right now, sending it your way to melt some of that snow.

        • #33204
          Valerie
          Participant

          @jenc, I’ve lived here almost all my life. In my infancy, I lived in the northern district. The climate is harsh there. I think it would be very hard for me if I were there now. But even here, in a moderate climate, there are such weather surprises! Have you moved to a more southerly place too? Has it affected your well-being? I have heard that climate change is sometimes quite difficult for the body.
          It’s snowing again, lol. It seems that the warm blanket and tea that you mentioned are for a long time. But it was sunny the day before yesterday, and I thought about you and San Diego!

        • #33225
          Jen Cueva
          Keymaster

          Hi @valeriekv, Wow, you’ve only known those cold, harsh winters all of your life. Does that help at all?

          Yes, climate and conditions certainly impact our overall health. When we lived in Texas, their pollution, heat, and humidity made me struggle with my breathing more. That’s why I enjoy living here in San Diego; I’m outside most days. I also spend most of the hottest, more humid days indoors.

          I’ve been to visit my late MIL in Ohio during the holidays, and that cold air burned my lungs. This seems to be the best place for breathing for me.

    • #32981
      Tracey
      Participant

      @valeriekv you made me laugh – yes my guests were kinda creepy, and totally inconsiderate.


      @jenc
      , @colleensteele, it is annoying having to repeatedly say things are far from over.  @colleensteele I saw your comment on another platform about the number of pills Cullen takes in a week and it prompted me to work mine out. 240 a week. Crazy right?

      I’ve had a really good 6 days with the kids, they really inject a fresh energy into me and they are just so thoughtful and loving. Though I do have to say I have probably over done things a bit because I’m really struggling today. But they’re off again tomorrow and I can rest then.  Right now I don’t want to miss any time with them.

      Enzo is so totally besotted with them that I’m feeling a bit like chopped liver. But he’ll be back in my bed tomorrow and I’ll be nursing his pining heart.

      • #32993
        Colleen Steele
        Keymaster

        Oh @traceyaustralianmigration-co-za it’s great to hear how much you enjoyed your very special company! We had a black lab who developed a strong bond with my dad. Whenever my parents visited she would stay in their room instead of ours at night, and hang out with my dad all day, then mope for a week or so when he would return to NJ. But, we know she still loved us very much too. She just wishes she could keep her pack all together.

        My jaw dropped when I calculated that Cullen takes 240 pills in a week. When you look at a day’s work it isn’t as overwhelming but looking at the bigger picture is crazy! It makes me worry, what if Cullen has insurance issues in the future, especially once he if off of our health insurance? I lose sleep over it sometimes.

        I was surprised that you have Cullen beat in the pill department. I thought transplant recipients were among the few who deal with a fist full of pills every day. Were a lot added after your recent procedure?

    • #32988
      Dawn
      Participant

      @jenc, thanks for the check in. Sorry I’m late replying. I’m actually doing pretty well.  Doing very well with the depression, although like many here I don’t like it getting dark so early!  Once it gets dark, my energy seems to disappear.  I’m using a light box, to help with the depression, and it seems to be making a difference. I also had sort of an ‘a-ha’ moment with a major issue that I’ve struggled with in therapy for quite a while, and so far it seems to be making a huge difference in treating myself with more compassion and having my own back.

      I hope everyone who is struggling finds things easing up soon.  I wanted to add my two cents as to sedation with a rhc. I get lidocaine at the entry point of the catheter, but am otherwise fully awake. It’s a weird sensation to feel the catheter moving inside, but I have total trust in my Dr and his team at Johns Hopkins that do my rhc. They even let me pick the music for the procedure room – ha!  I think it was you, Jen, that mentioned you’d rather have a rhc than a dental procedure. I’m right there with you!

      One thing I want to ask for some feedback on from folks on the forum is whether you make adjustments on your lpm settings yourself or do you get your dr’s ok.  I’m on 6 lpm on my tanks, but at times it just doesn’t feel like enough.  I need to check my o2 levels with my oximeter while I’m doing something with my tanks on to be sure, but I wanted to see how other people handle this.  I would likely run it by my dr if I found increasing the lpm helps.  So, thanks for any input!

      • #32990
        Colleen Steele
        Keymaster

        Hi @dawnt, it’s always nice to hear from you. I will let those with current experience answer your questions. I just want to express how happy I am for you that you have been getting on top of your depression. Congratulations on your “ah-ha” moment. I hope from this point on you continue to heal from past issues and move forward with a sense of peace.

      • #32997
        Jen Cueva
        Keymaster

        Hey @dawnt, no need to apologize ever for not responding. I know we all have lives outside the forums. Plus, PH life adds to that. I’m grateful to know that you have a vast realization with therapy and learning g to be more compassionate with yourself. Would you mind sharing a tip or 2 that has helped you? I’m always struggling with this, too. We are always our worst critics, right?

        Yes, that was me, about the dentist, hehe-

        Years ago, we worked out a plan. My PH team and I came up with a chart based on my feelings and stats. We did both, but we may have increased symptoms without much of a drop in oxygen at times and vice versa. I adjust mine as needed with my oxygen based on my stats. Although they prefer if my stats are low, I use it 24/7.

        It’s a personal preference and based on your relationship with your PH team. Maybe you can email or call and tell them you’re noticing a drip or incr4sae in symptoms, and increasing it a little seems to help. Is that something you can do? I bet they are willing to create a plan that you can ib=ncrease or decrease depending on how your relationship is. That’s another huge factor in doing this like this. You know your body and how your team will react.

        I’m hopeful this will help, and others will chime in on this topic. Would you mind letting us know what happened when you tried and contacted them? Excellent questions that maybe they probably find themselves asking at times with oxygen.

        – Big hugs to you my PHriend, take care.

    • #32996
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, I’m so happy to hear how much you are enjoying the kids. I know that was all too overdue and must be uplifting for you. I definitely can see where you possibly would have overdone it. It’s when of those “pay to play” times that we wouldn’t change for the world.

      Too funny, your story of Enzo making you feel like chopped liver. Manny and I say that when our daughter is in the house. Sasha clings to her. She does the same to me when Manny gets home from work; it’s like I’m not even there. But then again, she has been with me all day, hehe.

      I hope you and Enzo are now resting and recovering after a few wild and crazy busy weeks. Are you in your comfy PJs?


      @colleensteele
      , and Tracey, I haven’t calculated my pills for a week, but since I have cut back on a few within the last year, I know both Tracy and Cullen are above my counts. At one time, I was taking over 20 pills per day, closer to 30, so now it’s now under 210. Do I get extra points for my subQ injections every 2 weeks? Jk-Hehe

      That’s why I don’t know how our SubQ users do it, but they do and take it like a champ!


      @colleensteele
      , I can’t imagine how worried this makes you. I hate that this keeps you up at night, my friend.

      Are the medications he is on eligible for copay assistance plans? Especially with him not working, they should def have plans. Even afterward, when he has a job, most drugs have some plan. Please let us know how we can best support you as you get closer. If you have a list of all of his meds, I’m happy to work down the list and help you do some groundwork looking for those options. That way, he has it all if needed.

      – Big hugs and love to you both.

    • #33054
      Randolph Reynolds
      Participant

      Jen

      To bring you up to date we just returned from playing cards with friends (do that every Friday).  This was my wife’s second outing using the walker only.  The logistics of getting both of ready to go for a three hour game under out circumstances is daunting.  But comparing to some of the reports I’ve read hear that is part of the life style.

      My wife’s pelvis is healed but she has severe nerve pain in her left hip and this is due to that leg being the load bearer for so long.  She is still restricted on putting her full weight on both legs other that when doing PT.  Her recovery is at a snail’s pace compared to her recovery from the knee replacement.  As for me since I last wrote I had to move the infusion site (subcutaneous) again due to pain.  I pray that it will settle out soon.  Pain is a drain on us as all know.

      Just a short summary.  None of our friends really can appreciate how difficult it is for the two of us to hold things together.  Patience is required.

      • #33058
        Carol Volckmann
        Participant

        So sorry Randy your wife’s rehab is going so slowly, but it also sounds like her recovery is going forward.

        It has to be very difficult for both of you facing your health issues. You do and you take care of each other and make sure you do check in with your friends every Friday. That is huge!

        Dealing with subQ really is one big pain. I am so sorry. After 16 years on SubQ I finally said I cannot take it any more and switched to IV Hickman line – no more site pain just cumbersome and limiting  to a degree.

        Well it is Friday and you and your wife are playing cards with your friends! Have a wonderful weekend 😀

      • #33066
        Jen Cueva
        Keymaster

        Aww, @ripple76, my heart goes out to you both. It must be beyond challenging to get you both dressed and out the door. I’m grateful that you made t to play cards. What an accomplishment! I bet you both slept hard after that.

        I’m sorry to hear that you had to change sites yet again. I hope and pray that you get some pain relief soon. Your poor wife that never pain is another booger to deal with. I’m sorry that she’s having this pain and the slow recovery. As a snail goes, slowly, you will both get there, buddy.

        I can relate to that final comment about none of your friends understanding how difficult this is on many levels. We are here and ready to support you as best we can. I want to reach through my screen and hug you and your wife, both, air hugs, for now.

        I pray that you are also taking care of yourself.

    • #33055
      Colleen Steele
      Keymaster

      @ripple76 even though the process of getting out the door isn’t easy, I think it’s great that you and your wife keep those plans with your friends. I often feel envious of people who have friendly weekly routine like that. Conversation, laughter, change of scenery…I’m sure it’s all worth it.

      I’m sorry your wife’s recovery is going slowly and that you have been dealing with more site issues. I understand how none of it is easy. Thank God you have each other and of course you have your friends here who are always happy to listen and provide support.

      Have a nice weekend. I wish you and your wife the best.

    • #33060
      Dawn
      Participant

      Hi @colleensteele. Thanks for your kind words and well wishes. I wanted to reply to your concern about your son’s possible expenses when he is off your insurance. There are many, many programs that help with medication costs, co-pays, equipment etc. It can seem very overwhelming dealing with their guidelines of who they will cover, and what they’ll cover, but there are programs available. I have co-pay assistance for my ph meds, and I’m lucky to have good insurance at work.  Since I’m likely within 5 years of retiring, I also think about what happens when that time comes.


      @jenc
      , yes, I’ve always been my own worst critic as well. One of my biggest things is looking at how I treat people I care about and love. I would never talk to them like I talk to myself at times.  It’s been a lot of work in therapy, but I’m much better at believing I deserve at least the same loving treatment I give others. All those mistakes, errors in judgements, etc. that we all make are not worth beating ourselves up over when we would offer love, understanding and empathy to those we care about for those same actions. What I realized is that I’ve lived so much of my life believing that I didn’t matter enough to fight for myself. But at the same time there has always been a part of me that keeps going no matter what, and that IS fighting for myself. I’m choosing to embrace that it’s ok and it’s my right and my job to believe in me and to fight for myself. In the couple/few weeks since I really realized it’s really up to me to be my own best supporter, things have been going very well. I know there will be ups and downs, but this feels important to me and something I don’t want to let go of. It probably sounds like common sense to many people, but it’s been a hard thing for me to believe for myself.

      I did send a note to my ph dr today about adjusting my oxygen when I’m doing something and feeling like the 6 lpm isn’t enough. I’ve not heard back yet, I’ll let you know how it goes. I checked my levels, and tried a higher setting doing a couple things that tend to make me feel like the lower setting isn’t enough and it seemed to make a good difference. I’m thinking my dr will say it’s ok as long as I’m not feeling like I need the higher setting all the time. Then we’d probably need to be checking things out.

      • #33067
        Jen Cueva
        Keymaster

        Hi @dawnt, I appreciate how you shared your tips. I, too, struggle with offering myself the same grace and love that I show others at times. I’ve been working on this for a few years. For me, I felt that I wasn’t good enough or deserving but now know better. We all deserve to treat and love ourselves like we do others, if not better, as my therapist once said.

        This struggle is hard and takes ongoing work; in my opinion, IDK why some have no problem with this and others like us do. Any thoughts?

        How are you feeling today with your breathing? I’m happy that the higher setting of oxygen seems to help. Hopefully, your PH doc will agree that you can increase it when you need to depend on how you’re feeling and stats, etc.

    • #33070
      Dawn
      Participant

      Hi @jenc. I’m not sure why some people escape those feelings of not being good enough or enough in general. I think a factor could be not being accepted as we are when younger, or being told there is something ‘wrong’ with us.  I think we can become so unsure of ourselves, speaking for myself, that we think the only way to be accepted/loved is to be a perfect little kid. That continues into so many aspects of our lives as we grow older. Therapy is hard, but such a help on those types of issues, because no one is perfect. It’s a no win situation trying to live and be perfect.

      I heard back from my ph dr, he said he is fine with what I’m doing with increasing my lpm when I feel I need it. He does want a pft and 6 mwt done, just to check that my current setting is adequate.  I don’t mind the pft, but I really dislike those 6 mw tests! Better to be sure on the actual numbers needed for the oxygen, so we’ll see what happens.

      • #33071
        Colleen Steele
        Keymaster

        @dawnt I know your message was for Jen but I felt a lot of emotion when reading your view on “not being good enough”. You have given me something to reflect on that might be long overdue. Thank you for sharing.

        My fingers crossed that everything goes well for you and that your future PFT and 6 minute walk reflect improvement or at least stability!

    • #33078
      Jen Cueva
      Keymaster

      Hi @dawnt, that certainly brings a bit of light on why I also struggle with this. I worked through some of this with my therapist but will be needing to change therapist soon. I’m NOT looking forward to that. But struggles, as you mention, not being good enough is relatable in many ways. I was always the “good” daughter, so perfect was the only option.

      Thank you for being vulnerable and sharing such challenging parts of your own life to help others. We often learn that we are not alone in these mental struggles.

      I’m grateful that your PH doc will allow up to increase your flow. But those 6MW and PFTs are not my favorites, either. PFTs always caused my anxiety if I knew I was planning to do it. It was mainly because of my experience with a few sergeant types of Respiratory Therapists that did mine on many occasions. I would blow until I thought I would pass out, and she continued yelling at me to blow harder. But after she was not there, I was not so anxious for this one, hehe. – Wish you all the positive thoughts and vibes that the tests go well and show what you need without showing progression.

      I’m sending you much love and huge from San Diego, my PHriend. You are enough, and you are loved!

    • #33106
      Dawn
      Participant

      Thanks for your comments @jenc and @colleensteele. I hope that anything I write about doesn’t bring up too many painful memories, although I do think facing those memories and working through them makes a huge difference. And, unlearning the things we may have been taught that weren’t true and only hold us back. I agree, Jen, that sharing can often show us that we’re not alone in so many experiences.  I feel for you in needing to change your therapist Jen. My therapist is slowing retiring, and it’s hard to think of not having the comfort level that I have worked up to over time with someone new.

      • #33109
        Colleen Steele
        Keymaster

        @dawnt please don’t hesitate to write here about your experiences and your feelings. What you shared gave me more of an “aha” moment. It inspires me when I hear about someone working through years of emotional damage. I’m proud of you my friend!


        @jenc
        it’s funny/not funny that you referred to some therapists as sergeant types because I remember Cullen’s respiratory therapy for the first few weeks post-transplant being boot camp level. Pushing him to do better was important but some of the therapists I think could have had a better bed side manner. Those who encouraged more than demanded always got him to push through a lot better.

        • #33117
          Jen Cueva
          Keymaster

          LOL, @colleensteele, that is funny to me now, especially when I go in for PFTs. I can laugh now about that harsh RT who yelled at me nonstop. I know she was doing her job, mostly. But after nearly passing out twice from blowing when she said it was not hard enough, I was ready to see her leave.

          But usually, the ones who push us the most can yield better results. Not all react that way, though. I have heard some who say that only makes them mad. Manny comes to mind. If he is pushed beyond what he thinks is normal, he gets angry and wants to give up rather than push harder. He’s not like that with me or at work, but in other instances. Do you know others like that?

      • #33116
        Jen Cueva
        Keymaster

        Hi @dawnt, oh no, I hate to hear about your therapist retiring soon. I know that must be scary as you know it’s coming. Will she be referring you to someone who you maybe can transition over to slowly? I relate to that as I am scared that I won’t find someone comfortable enough to open up with. At first, I thought I would never talk to a stranger, well, in that way. I talk to everyone, believe it or not, Hehe. But I mean on such a personal level.

        Yes, knowing that we aren’t alone is helpful. Also, talking about the issues rather than keeping them bottled up help, and I know this after years of bottling too many of my emotions. It is painful to discuss many of the topics that cause mental struggles, but it is worth it. I usually feel lighter after opening up on such complex issues. Do you find this, too?

        Challenging memories from my childhood are often most difficult for me because I think I’m saying I had terrible parents, and that’s so far from the truth.

    • #33143
      Dawn
      Participant

      Hey, @jenc, yes I do know that feeling of things feeling ‘lighter’ after bringing up a topic that is particularly difficult. I also get having difficulty, feeling like you’re saying something negative about your parents. I’ve often dealt with that in therapy, because I loved my mom so very much and still do even though she passed away 17 years ago. My dad left our family when I was 11 for another woman, but until then I had always been a daddy’s girl.  My mom had three of us kids to take care of, without any help financially or otherwise from my dad. She was really an amazing woman, and I had/have a lot of respect for all she did and her strength and caring.  I know her life wasn’t what she thought it would be, and I know she did what she thought was best. Things happened that I didn’t handle well, didn’t know how to handle, and back then therapy wasn’t as accepted as it is now.  It’s not blaming or pointing fingers in therapy, it’s acknowledging that stuff happened and left behind issues for some of us. I realize for many people, unfortunately, there were particular events or behaviors that were inflicted on them deliberately and that is a different situation.

    • #33161
      Jen Cueva
      Keymaster

      Hi @dawnt, well said! You’ve come so far with your depression and therapy, and that’s only a tiny portion that I know from your posts. Your mom sounds like she instilled strength in you, and I bet she would be proud of you today.

      My parents divorced when I was in 2nd grade. My dada didn’t go MIA, but my mom raised us 3 girls alone until she met and married my stepfather. He also raised us like his own. I love my biological dad, but he was unaccountable for some time. I credit my mom for instilling strength and perseverance in me.

      Yep, those stories that deliberately hurt others in some form are heartbreaking, ad I can’t imagine how much those people struggle daily. But we learn as we get older and hopefully can grow and move on. It’s complicated and can kill us if we allow those things to consume our lives, right?

Viewing 23 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account