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What is on your medical calendar for April?
April showers bring May flowers, but what will a calendar teeming with medical appointments bring you? Please share your schedule with us so we can offer our support.
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36 Replies
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I had an abdominal and pelvic CT to check on my umbilical hernia. I finally saw the surgeon and she has checked with my Pulmonologist to see if I can have surgery if needed and he had given his ok. The hernia is larger than it was last year, so most likely will need repair.
I also have appointments with my Opthalmologist and Rheumatologist. Busy month.
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@Debra Gonzales No one wants to have surgery, but I bet you are relieved that you have been given the go-ahead because I imagine you are hurting. Let us know when the surgery is scheduled so we can support you!
You do have a busy month ahead. I hope all of your appointments go well. We will be anxious to hear updates.
How are you feeling overall?
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Hey Colleen. What started as a relatively empty calendar for medical appts has blossomed into a bit more. I had hematology appt last week, nephrology today and iron infusion Wednesday. I also have a telehealth visit with Palliative Care later this month. I was told today I have CKD, stage 3b. Not good, but could be worse. This was somewhat of a shock to me. Seems there’s another diagnose to add to my list. I’m a bit down about it; I’ve learned recently I have chronic anemia as well.
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@DeLois Tweedy I am so sorry to hear that you have been diagnosed with kidney disease. I can imagine the shock and worry it has added to your already complex medical history. I think you already know that @jen-cueva and my son, Cullen also have kidney disease. Cullen is stage 3 but has remained stable for many years and knock wood…that continues! We are here for you my friend.
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Thank you Colleen-Steele, I am feeling ok. Not exactly looking forward to the surgery, but at least I can get it taken care of before it becomes a real problem. I will let you know when surgery is scheduled.
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Colleen, thank you for your sweet thoughts. I knew Jen had CKD and believe it or not, she was the first person I thought of when they gave me the diagnosis! I probably knew your son had kidney disease as well, but it had slipped my mind. I pray he continues to do well and the progression is slooooow. The nephrologist called me this afternoon and had received a call from my cardiologist at UVA. It is so reassuring to me to know these 2 doctors from different hospital systems are sharing info and trying to come up with a plan that will probably include meds for the CKD, but not interact with my heart meds. Have a great Easter!
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@DeLois Tweedy It is a rare blessing when doctors from different hospitals are willing to collaborate. We were very fortunate that Cullen’s doctors in WA were willing to share their care for him with Stanford. They wouldn’t give him a Tylenol without calling his PH specialist in CA and discussing it with him first. I am so relieved to hear that you are receiving the same type of care. The diagnosis is hard to hear, but the care you are receiving sounds excellent, and with that, you can hold onto hope!
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I asked a couple weeks ago about Tyvaso DPI. After I explained to my doctor that using this medication would not fit my life style. I was afraid I wouldn’t be able to adhere to the 4 times a day regiment. After, long discussions she decided I would be able to try Winrevire. The nursing team comes to my home on Monday to show me how to use it correctly. I will report on this and let you know y’all know how it goes. Thanks for listening and support. Really appreciated!!
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@cindy-bee You should be proud of how well you have advocated for yourself! I’m curious, is it an ACCREDO nurse coming to your home to train you? If so, my son has had experience with them for the same purpose, and they are wonderful! I look forward to hearing how it is going for you!
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Yes, Accredo is the specialty pharmacy that sent the nurse to teach me how to inject Winrevier correctly. The nurse was full of knowledge and made me feel comfortable.
I am so glad to have the fear of giving myself an injection behind me. The fear was much worse than the injection.
It has been 34 hours and so far I haven’t any side effects. I know the initial dose was small, but a success is nonetheless a success. I have been lucky with side effects from Adcirca and Letairis. Almost nonexistent. But, after 12 years my PH needs a boost. I hope Winrevier is the wonder drug it claims to be.
I will check back in after my next bloodwork and 2nd dose and let y’all know how it goes.
Breath easy!
Cindy
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@cindy-bee The training and adjustment period is often intimidating with several PH treatments, but if it improves quality of life, it is worth it! Accredo nurses are very good at what they do. When Cullen was in grade school we even had an Accredo nurse meet with his Principal and teachers before the start of each school year to refresh them on PH and the treatments he was on, especially his Flolan.
I wish you the best and I really hope this change will make the difference for you!
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You and your pulmonologist made a good call. I’ve been on Tyvaso DPI, Tadalafil and Ambrisentan for a number of years, but because those drugs’ vasodilation causes me profound nasal congestion, especially at night when I need to use my CPAP, my pulmonologist and I made the decision to ask the VA to approve Sotatercept/Winrevair for me on the basis of the lack of similar side effects. The Tyvaso cough is notorious. Ambrisentan’s congestion is similarly notorious. Even Tadalafil, despite as many wonderful positive effects, also causes nasal congestion because of it’s vasodilation. I’ve been using a novel and new three ingredient or four ingredient nasal spray which unfortunately resulted in rebound congestion, so I need to leave it and adopt a new PAH med so as to be able to sleep effectively at night. Wish you every success in your PAH path.
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My winrevier is paid by VA. I have CHAMVA which is the civilian medical for family members. However, you should check back with VA.
I agree the dry cough from the Letairis sometimes is really annoying. But, it beats the alternative with out it.
It has been over a week now and the only SE seems to be a slight headache. But it isn’t to bad.
I wish you luck with the VA.
Breathe On,
Cindy
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VA approval of Sotatetcept.
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@Rivegauche610 That is good news! When will you be starting it?
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Right after the VA approves my pulmonologist’s request!
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How about this: Two weeks in ICU a week in pulmonary support. It was a near death experience. I was rushed(!) to a hospital in Phoenix. The remainder of this month I’ll be trying to bring things back to normal.
Need post hospitalization support. Feel as if I’m locked up mentally and physically.
I learned more about pneumonia than I ever wanted. Also going back onto Remunity pump was extremely challenging.
I’m home and being watched closely by my wife.
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@Randolph Reynolds My heart sank reading your update! I am so sorry to hear how seriously ill you have been! Scary for you and I’m sure scary for your wife too! An experience like this would have havoc on the emotions of most people. Whenever you need to vent or have questions, feel like updating us…We are here for you! I will be keeping you in my prayers.
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I wish you all the best!
Breathe On,
Cindy
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Good afternoon @Colleen . April started out pretty open and with only 2 weeks left coming up I have an appointment with my Cardiologist, Dentist, ENT, and Dermatologist. My Dermatologist found 3 Melanomas, and something suspicious under one of my finger nails. I will have all 4 surgeries next week 🥵 I am not looking forward to any of them – but I am pleased she going to deal with these quickly. I did see my Gastroenterologist at the beginning of April and he has me on a new med for my SIBO – nothing so far has not worked at all. Hoping all is good to go! 😊
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Geez, @carol-volckmann that is a lot crammed into 2 weeks! I hope it means May will be a lot less full! My mom has fought skin cancer for a long time. Is it the Mohs surgery you are having? If it is, it is tolerable as far as surgeries go. I hope that will be the case for you. It is important that they caught it are and dealing with it immediately. My fingers and toes are crossed and prayers will be prayed that the new med works well for you. I’m so sorry you are going through all of this!
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@Colleen HI again – thanks for crossing fingers and toes – but just wanted to add – be careful 😉 of those toes, don’t get cramps 😁 hehe. Lots of warm hugs!
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@carol-volckmann Hey, I’m willing to sacrifice pain if it might help you! 🤣
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Hello @Colleen I had two of my procedures yesterday, the freezing the precancerous on my left shin bone and … the worst was taking a biopsy under my nail – a needle 🪡 at the tip of my finger under the nail was 🥵🤯🥶. Depending what they find, hopefully 🤔 they will not have to remove my nail. More to be done on my left arm – some chopping.<div>
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Thank you for your support. Thinking what your mom has gone through helped me.
Lots of warm hugs and love ❤️.
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@carol-volckmann I cringed and sucked in air just thinking about them digging under your nail! Good grief, that sounds awful! I’ll be praying for the saving of your fingernail! How is the recovery from the other scrapings going? I’m so sorry you are going through this when you already have so much medically on your plate!
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Thank you @Colleen for always being there supporting, always with empathy that warms my heart.<div>
I do not have the biopsy yet to find out what may be the n ext step. The pain has been bad but eased up today (thank goodness). If the Dermatologist has to remove the nail I will give up all the secrets known to mankind!!
I will let you know. Thank you again sweet woman. I am sending you warm hugs and ❤️,
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@carol-volckmann “If the Dermatologist has to remove the nail, I will give up all the secrets known to mankind!!” I appreciate your sense of humor in difficult situations. My family has long found strength in dark humor! I hope you are feeling some relief and can enjoy the weekend. Any plans, or is the plan to relax?
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Good morning @Colleen , I just saw the biopsy report … the good news it is not cancerous nor precancerous. It appears to be related to my Sclaraderma. Don’t know what is next. I will find out Tuesday.
The plan for the next couple of days is to relax and enjoy Springtime weather. My 82nd is tomorrow – plan to stay home and enjoy the sunshine. Dinner will be rack of lamb, asparagus, baked potato, salad and ice cream with Dick’s chocolate sauce!
In my family birthdays 🎂 were not a big thing. My father would give my mother flowers 💐 on our birthdays (4 of us) and on my mother’s birthday, he would send flowers to her mother. I think that is great!! I just keep looking forward to the next one and keep on going…
Thank you Colleen, you are one very special woman! Love and warm hugs. 💕
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@carol-volckmann Happy birthday, my dear friend! I wish you improved health and happy days ahead!
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Posted by mistake; please ignore.
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Hello sweet friend @Colleen . Thank you for such caring support. The surgery to remove the Melanomas will not be Mohs, it will be surgically remove then stitches. Not fun but you are so right on how important it is to catch these soon enough.
Growing up who knew about Sun screening, we even put baby oil on and lemon juice in our hair … All the sailing I did without a care of what damage the sun was doing to our skin – we are paying for it now.
Hoping May will be better, thank you Colleen 😊. You have been in my thoughts – what is on your date book for May? Does Cullen have his summer break or is he going to take more classes this summer?
Sending warm hugs and love ❤️ please take very good care of yourself.
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@carol-volckmann My mom’s skin cancer also derived from her youth in the ocean. My grandparents owned a summer home on the Jersey shore, where my mom would cover herself with baby oil and iodine to tan. But she had pale Irish skin, so what she always did was burn!
Unfortunately protecting the skin from the sun was not on anyone’s radar yet in the 70’s which is when I was born. Mom taught me the baby oil and iodine trick which I practiced well into the 80’s. No sign of cancer on me yet but I keep getting checked.
Cullen wanted to take summer classes but he is already many classes ahead for his senior year so his advisor suggested he enjoy the time off. In July he is going to Wisconsin for a few weeks to visit the Steele side of the family. He really likes going there and they take real good care/ spoil him when he’s there. Thanks for asking.
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@Randolph Reynolds I just read your post. I am so very sorry you has such a scare. Thank goodness you went to the hospital in Phoenix – they are one of the best. Gladcto hear you are now home which must feel so good after 2 weeks in ICU. You also must be emotionally drained. Please take it easy. My thoughts and prayers 🙏 are with you and your wife.
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Emotional drain seems to be a SE that could a use a special treatment itself. Remember, it is ok to treat yourself or others to something special and naughty like a good Ice Cream cone of your favorite flavor. It is only a temporary fix but what a fix!
Breathe,
Cindy
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@cindy-bee Excellent advice! @Randolph Reynolds Any updates? How are you feeling this week?
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I feel good. Not sure if it is a SE yet, but I have been having a slight headache that comes and goes. However, not really not bad enough to take tylenol. So all is good! Thanks for asking!
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