-
Brittany Needs Our Support
-
Hey @cdvol3gmail-com, so happy to hear that you tested negative for COVID-19. I am also grateful to read the update that you were discharged and improving. I am hoping that each day will offer you more relief so that You can start feeling back to your “normal.”
It sounds like you have what you need in the motorhome. I am a tad concerned as I read that you are headed to Washington state. My apologies as I forgot where you are currently. I am guessing in the majority areas that you will travel, and most are on some type of lockdown. Today here in the Houston area, the ” stay at home order ” is effective. Will this affect your plans in some ways?
I am sending you lots of air hugs from Texas.
-
Thank you Jen for all your encouragement. Yes, we have everything wr need in the coach. The special pharamacy ups to wherever we are and we are able to do all our remodulin mixing 7 at a time so that takes the pressure off. I do hope I will be able to go off the oxygen in another week.
Currently we are in Cottonwood AZ and plan to stay here near the hospital. They don’t know much about PAH or the meds I am on but they know about pneumonia and they have listened to me about what I need.
AZ so far is a good place to be – we are far from anyone and the State campgrounds have not closed. WA certainly is not the ideal place, but we need to get back to find something to rent west of Seattle out on the peninsular of the San Juan islands and shelter down for awhile. Our secondary insurance is WA and it has been to good to try somewhere else. It is tough to know what to do.
Thsnk you again and please stay healthy and safe yourself! Big hug – air one!!
-
Carol
When I saw that you were in Cottonwood it sparked my interest because I live in Prescott. My PAH doctor is in Phoenix, a Doctor Ahearn, it sounds like you have things in hand but if you have a need I can send you his phone number. I assume you have an injection port for you Remodulin whereas I use a pump. You have to mix the Remodulin and that seems to me to add a burden to the process. The fact that you might be able to get of the oxygen is a something that would cheer me up but I’m stuck with as a part of my treatment. Without it my oxygen level drops into the mid 80s. Due to this virus my oxygen supplier shut down their office in Prescott. I may be forced to change to some other supplier. That is another headache. I really wish you the best on your endeavors. Our prayers go out to all of us who have PAH in this horrendous change in life style.Randy
-
Hi Randy, thank you your doctor’s name,I wrote his name down. The folks here in Cottonwood really did not know very much about PAH and nothing about remodulin, but they were on top of pneumonia!
I was on subQ for 8 years until it got so painful pain meds did not help so now I am on the Hickman line. The mixing and all the supplies at first was overwhelming and scary. After a couple of months we have been doing our own mixing – mixing 7 cassettes every 2 weeks. The best part NO PAIN! My husband put a hook on the outside of the shower so I can hang the pump there. I also cover the site with an Aqua Cel Foam – completely water proof and I can keep one on for about 4 days so it keeps the site sterile.
Thank you Randy for reaching out. I read your thoughtful, caring and encouraging postings and really appreciate you.
Take very good care and stay safe!
Carol -
@cdvol3gmail-com I am thinking of you and hoping for the best wherever you end up ! I know that right now it is so scary because there is so much unknown and so much just up in the air as far as what is the best decision to make. I feel like AZ seems like a good place for you right now and I am glad that they are listening to your concerns and what you have to say. That’s important when they listen and take you seriously and actually BELIEVE that you know what you are talking about. It’s hard to find a doctor like this sometimes but it seems like it is working out okay right now ! Thinking of you and wishing you well and healing vibes sent to you.
-
@ripple76 great to see you on the forums ! I am sorry to hear about your oxygen company shutting down. Did they transition the patients that use their supplies to another company? I feel like with everything going on, these supply companies really need to have open communication with patients and make sure they are well taken care of. I hope that some type of transition happened for you. I know how stressful it is to feel like you have to manage your own healthcare needs during this time.
-
@cdvol3gmail-com, I am so glad to hear that y’all have everything and are staying near the hospital for now. WA is undoubtedly not an idea at the moment. It sounds like you are feeling better. I hope, too, that you will get to come off of the oxygen soon. I hope that you can continue to advocate and educate your doctors as needed.
Thanks for your kindness. Thinking of you and sending you positive healing vibes.
-
Hey @ripple76, that was so thoughtful of you to share your doctor’s information with Carol. That is what this forum is all about. I love the kindness and support shown.
I am sorry to hear about your oxygen company closing. I would think that it is an essential service. Hello, breathing is vital to life. I would hope that one must be open in your area. On their end, they should have transferred all of their patients before closing. I hope that you will get some results. Too often, we learn that we have to do the work for our care. This should not be your job, but now it sounds as if it is. Can your PH center help in this transition? Or maybe your insurance company?
Besides this, I hope that you are hanging in and have everything that you need.
-
This is for ripple76. I saw that your supplier for oxygen is no longer supplying it for you. I just got out of the hospital and had to be on oxygen. A national supplier I received oxygen is called Lincare 800-346-6719. They came out to our motorhome where we live and delivered an oxygen generator and canisters that I can use going outside. They told us no matter where we are in the country, we can get more canisters or if I no longer need it, we can drop it off.
I hope this helps you. Sending best wishes, Carol
-
Brittany, Gen, and Carol
Thank you for your comments on my oxygen supplier. Today their home office in Phoenix called and are going to drop off replacements for my empties. That still doesn’t clear up support for my other equipment. The local office will remain closed. There was one person running it instead of three. I am looking into transitioning to a another local company that has stores nationally. Carol, the Pulmonologist that specializes in PAH is Dr. Gregory Ahearn (602) 443-0184) but I suppose you would need a referral. The medical profession is really hard hit. My wife has a heart condition that requires more tests and it is complicated just to get into the hospital. May everyone’s path through these times be safe, secure, and full of compassion.Randy
-
Brittany, Were missing you here!!! Sorry to hear your being hospitalized. Hope you are feeling some what better. Just know you are in my and many others thoughts and prayers. You are such an inspiration to many of us. We will keep praying for a full recovery for you and also for strength and faith at this most trying time.I enjoy reading your posts as you are knowledgeable and uplifting too.
-
Hey @cdvol3gmail-com, thanks for sharing that information on Lincare. They are well-known. I use Apria, and they are also throughout the US. When I moved from California to Texas, they were great at transferring me and getting me what I needed as far as supplies.
How are you feeling today? I am hoping that you are continuing to recover. Hugs from Texas…
-
@ripple76, I am glad to hear that they will at least refill your empty tanks. I hope that someone can help you with a new company. Please keep us posted on that. I did not realize that your wife has complicated heart conditions, too. It is certainly a difficult time for patients and medical staff, also.
Take care of yourself and know that we are here for support. Hugs from Texas-
-
Hi @susan-wheeler-johnson, your words are so thoughtful. Thankfully, Brittany is not currently in the hospital. I know that she will appreciate your thoughtfulness.
How are you doing? We are here to support you.
-
Randy, thank you for name and number for your doc in Phoenix! You are terrific!
JEN, thank you, i am feeling so much better. Just finished cleaning the coach of Golden Retriever hair. Hopefully I will be ready to turn in my oxygen this coming week!!!
What a wonderful support team! Hugs all around!
-
Wow, @cdvol3gmail-com, what a workout that must have been! I’m sending you positive vibes that you can turn in that oxygen. I am sure that it will be exciting! That may deserve a party, Hehe.
I agree, what a supportive team we have here.
-
@cdvol3gmail-com this certainly is amazing support. The best of the best! I am glad that you are hopefully turning in the oxygen real soon. What an amazing feeling that will be for you! Such a victory. I am sure, like Jen C said, that your dog hair removal gave you a workout! My dog doesn’t shed too much thankfully. We usually get him groomed about every 2 months so that he doesn’t have a ton of hair like the usual King Charles do. We like to keep it shorter, although the shaggy ones are super cute too! How old is your dog?
-
Hi Brittney, I am so happy you have your King Charles, I forgot his name but I know he brings you so much fun, comfort and LOVE! Our Spirit is 9 – his name pretty much describes who he is. Our last Golden was 10 when we lost him to cancer – River was full of love and fun. We think River must have picked out Spirit (okay folks you’re older now and you need someone a bit more mellow). Cleaning up his hair and brushing him is just what I need to do – he loves the brushing part! Our dogs bring all of us truly unconditional love and so much joy. Paw hugs!
-
Carol,
My dogs name is Bernie! He is a great boy and I can’t picture my life before we had him. It’s like that feeling people talk about when they have a child that they can’t imagine what it was like before the child. My fiance and I took about this all the time in relation to our dog. We are so glad that he is a part of our family . He gives me more exercise and energy than I ever could give myself and more love and support too.
-
@brittany-foster and @cdvol3gmail-com, so true. We have a mini schnauzer, and she is almost 7. She is our baby since our Daughter is grown. She is on the couch growling currently as she hears the garbage truck out front. She does not shed hair, thankfully. She does like to get on my yoga mat and stretch when I roll it out. Hehe
I also find that taking her out back is good for me as we can both enjoy the nice weather. She gets hot fast since she is black. But she does give me more exercise. Her name is Sasha, and she can be a Drama Queen, Hehe.
-
@jenc I could totally have a separate chat just about our pets ! I love my little Bernie as you can tell from all the pictures and videos I take with him. He really keeps me busy through the day. I can see why more people are adopting pets and wanting that companionship especially with more down time. I know of a lot of people who are fostering animals too and I think that’s an awesome idea that will hopefully lead to a lot of adoptions .
-
Excellent point, @brittany-foster. Pets could be an entire topic. I am sure that others who have not shared yet, will share about their pets. That would be awesome if more pets were taken in for adoptions. So many go without homes, it is sad.
Log in to reply.