July 31, 2020 at 4:30 pm #26522
Oh no, tomorrow is August already. Why does summer go so fast?
What is your August looking like so far in regard to appointments, procedures, surgeries or perhaps starting a new treatment? Please share with us what is in your near future so that we can provide support.
As many of you know, my son has been transitioning from pediatric to adult care. He just has one more specialist to see (migraine) clinic, and then he will officially be completely transitioned. The migraine clinic apparently is very behind because of COVID so they aren’t able to offer a date and time yet. I would hope it will happen sometime in August.
Cullen will also see his cardiologist again in August to follow-up with how he is doing after having a few emergencies this past month.
Also, starting tomorrow he is switching from Amlodipine to Nifedipine and we hope it will control his blood pressure better. That’s Cullen’s schedule so far. What is yours?
August 3, 2020 at 5:27 pm #26545
I am so happy that Cullen will soon have all of his appointments done, the initial ones. This must be difficult for him, too. How has he been through the transition?
I hope and pray that the change in meds will help to control his blood pressure.
I have some follow-ups, but not until later this month. I am hoping and praying that they have a cancellation, and it will be sooner. I pretty much have most other appts. on hold until this testing is complete. I do need to schedule labs as I am behind since I am not driving. I will look for a Friday appointment, and Manny can take me, maybe. Nothing major.
August 4, 2020 at 10:25 pm #26571
Cullen hang in there, you are almost done, protect yourself and keep the faith. I have a kidney procedure scheduled for 8/13, I think it is too soon after my eye, which I am waiting to see if it was successful. The kidney is not getting any better and is carrying the weak one. Then, I hope to finally get my hearing aid, that has taken almost 2 years. PH and cardiology appointments for 3week of month
August 5, 2020 at 8:42 am #26572Kathryn DowneyParticipant
I have an echocardiogram booked for the 19th that is also to do a bubble test to see if I have a hole in my heart. Supposed to do an MRI as well, don’t know if it’ll be in August though.
August 5, 2020 at 11:19 am #26575
Hi @jimi, I hope that you get answers and can have that kidney procedure. May I ask what procedure they are doing? I understand if you do not want to share. I just wanted to know for others who it could help, too.
When do you go back to the eye surgeon for a follow-up? I hope and pray that it was a success. Wow, a hearing aid taking that long sounds insane. Then the cardio appointments. You have a busy August, and hopefully, that will give you some relief and some answers.
After all of this, you will be a new man, right, @jimi? HUgs and prayers are with you from Texas.
August 5, 2020 at 11:23 am #26576
Hi @kathroonie, I hope that you will get some answers and positive results with your Echo with a bubble study this month. Are they not scheduling the MRI the same day? Often, as I go to the medical center downtown for my tests, they do several in one day, if possible.
That makes it easier for us to do it that way. If you ask, that may be an option. Of course, so many are backed up for testing because of COVID.
Is this a cardiac MRI? Please do keep us posted.
August 5, 2020 at 12:25 pm #26579
I’ve been praying @jenc that you get results sooner than later, especially since they are controlling your other appointments.
Cullen is doing great with the transition! It has been going so well! I can’t think of any problems other than insurance. He started the new blood pressure med today. Keeping my fingers crossed.
August 5, 2020 at 12:32 pm #26580
You are sweet to encourage my son like that @jimi. Thank you! If I may ask, what kidney procedure are you having done? Until you mentioned it, I did not consider the possibility of one kidney deteriorating faster than the other. I’ve been thinking of them as one organ but just like the lungs, they are technically two.
I’m happy to hear you are finally getting hearing aids. Cullen had an otolaryngology appointment last Friday. He has had tubes in his ears for almost 5 years. We were happy to hear they are still in place and working. His hearing test results looked great and no sign of infection. They are keeping the tubes in which he was happy about.
August 5, 2020 at 12:34 pm #26581
August 5, 2020 at 2:53 pm #26587Marsha AshurstParticipant
My first appointments with both the cardiologist and with the pulmonologist. Also with my internist.
August 7, 2020 at 9:03 am #26610
Hi from SC – I have PH resulting from an over zealous 20 hours of ablation trying to get AFib under control. This occluded my left pulmonary vein and pulmonary artery. So, my docs are not sure how to treat me. I finally have an appointment at the Cleveland Clinic Lung Transplant unit (not sure why they determined I needed to be seen there rather than the PH clinic) that was postponed during Covid pandemic. While I am concerned about the still high level of virus cases I don’t think I can put this visit off. Thankfully,y brother is flying me on his plane to Ohio thereby avoiding the airlines.
August 7, 2020 at 1:58 pm #26617
@jane42 lot’s of big appointments for you too this month. It’s good that they are happening around the same time to help get a clearer picture of your current health and hopefully a plan of treatment. Are the doctors from the same facility so they can touch base with each other. It’s beneficial if cardiology and pulmonology discuss your care together.
August 7, 2020 at 2:03 pm #26618
@nancyfant wow, that is awesome that your brother can fly you to your appointment! Has transplant been discussed? Are they maybe sending you to that clinic for transplant evaluation? I assume the PH clinic is still involved in your care? Let us know how the appointment goes and if you have any questions or concerns that you wish to discuss.
August 7, 2020 at 3:05 pm #26622
I have a poly cystic kidney that has constrictive (narrowing where 2 vessels come together) the kidney is holding fluid and thought to be partial cause to erratic high BP, leading to kidney failure. I chose the less invasive robotic surgery, whereas they place a stent. They discovered what had previously the good kidney is small and barely able to carry the load, possible last ditch effort before failure.
I hope to be around to see how 2020 will be detailed in history, everything going on has my PTSD working overtime. Today has been a good day, I finally can see slightly distorted images from my eye they operated on in July.
August 7, 2020 at 3:51 pm #26625
Thanks @colleensteele, I appreciate your friendship and prayers. Yes, it is wearing on my patience, but I am trying to remind myself that the results will be back soon. I do plan to follow up to be sure that I am on the cancellation list on Monday, hehe.
I am grateful that things are going well with Cullen. I hope and pray that his BP will stay stable enough on this new BP med. Cutting the dosage will hopefully do the trick.
What about your personal medical calendar for August? Anything? How are you doing pst PT?
August 7, 2020 at 3:55 pm #26626
Wow, @nancyfant, that is a lot to deal with at once. I am sorry that the ablation caused yet more issues for you. 20 hours for ablation sounds unreal. I cannot even imagine how difficult this was for you.
That is great that your brother can fly you to Cleveland Clinic. I do know that they have an excellent PH center there, too. They may have plans for transplant workup while also involving some of their PH team.
Have a safe trip, and please do keep us posted. I agree that despite COVID, this sounds like you need some answers and a plan of care now. You must be grateful for such a supportive brother.
August 7, 2020 at 3:58 pm #26627
Oh @jimi, I hope and pray that this stent will do the trick for you. I am grateful that you are noticing some results from your eye surgery.
I can only imagine how your PTSD has been triggered lately with all going on. My anxiety has been off the charts and my column on Monday talks a bit about this, I will be sharing that next week.
In the meantime, take care of yourself and be gentle. Take one day, one minute at a time.
August 7, 2020 at 4:19 pm #26631
Hi Colleen and Jen, thank you for your responses. I originally sent my records to a cardiothoracic surgeon at the Cleveland Clinic to see if he could correct my occluded pulmonary artery. He got several pulmonary docs and a cardiologist to also look at the records – I then got a call from the surgeon’s nurse stating that the concensus of the physicians was that I needed to be evaluated by the lung transplant unit. So I have not been told I need the transplant just that I need to be evaluated for one! At this point I do not feel I need a transplant – one of the docs who reviewed my records is a pulmonologist who I will be seeing at this visit. I live in Greenville SC and have a pulmonologist and cardiologist (extra trained in PH, heart failure and Transplant) – there is no PH center here but I really like the cardiologist; they both would like some recommendations about treatment. I actually have had PH since 2002 but it got worse in late 2017 – fall of 2019 I began having hypoxia – started Adempass and ended up with DAH (diffuse alveolar hemmorhage) and am now on oxygen. I have had to retire as a result.
August 7, 2020 at 9:13 pm #26639
It has taken 2 years to get an appointment with the VA for the hearing aid. They required a brain scan, and with PH, I am unable to lay flat for longer than 10 minutes. To get permission to go outside to a center that has standing or sitting MRI and CT scans nearly requires a congressional resolution. This has been back and forth for over 10 yrs-service disability.
August 10, 2020 at 2:10 pm #26649
Hi @nancyfant, I am grateful that you can make the trip and connections needed at Cleveland Clinic. It sounds like you and your brother both are prepared and have done your research. Is your brother your main support?
So, it sounds like you have had PH for much longer than I originally thought. I hope that your appointments go well and you will share the results with us once you are ready. It is great to have a backup. Now, will the Cleveland Clinic team work with your local medical team? That would be the best scenario for you, I would think.
August 10, 2020 at 2:14 pm #26650
Hi @jimi, I do know that the VA takes its time with most things. This is unfortunate for the patients, like yourself. A brain scan before you get a hearing aid? A hearing test does not suffice?
I am sorry that after serving the country you do not have better care. It is sad and unfortunate. My hubby was in the Navy, so I know everything is a process. But, this is sad and should be unacceptable.
August 10, 2020 at 2:18 pm #26652
@nancyfant being evaluated for transplant doesn’t necessarily mean you need to be listed yet. My son was evaluated at 8 years old and wasn’t listed until he was 13. We were actually glad we went through the process when he was healthier because it didn’t delay listing when he really needed it. There were some things that needed to be repeated but not everything.
If you do not feel that you need a transplant yet but your doctors want to because they don’t know how to treat it, I recommend trying to find a PH doctor. If you are able to travel out of state, which we had to do, it is worth it. I understand though that not everyone has the means to do that. I can’t remember if I gave this to you yet, but I attached a link to PH doctors. Maybe you will find one close enough to get to. The other thing your doctors can do is to reach out to PH doctors. I believe that doctors can contact others when they are stumped on something.
August 10, 2020 at 2:22 pm #26653
Hi Jen, thank you for your response. My husband is my biggest support and he will accompany me to the Cleveland Clinic. I have a medical background (nurse anesthetist for 16 years) and also a lawyer who specializes in disability law (haha). I am very pro active and initiated my contact with the Cleveland Clinic and then discussed it with my doctors here – they are very supportive of the evaluation since they really are at a standstill about treatment. I will let you know what I find out there.
August 10, 2020 at 3:29 pm #26659
Thank you for your response – my cardiologist is a PH doctor (extra training in heart failure, post transplant cardiology, etc). There just is not a PH Center here. My cardiologist and pulmonologist confer about me frequently. There is a good PH Center at UNC in Chapel Hill where my son lives so that is always available.
The information about transplant was helpful – just confusing as neither of my docs had thought I needed a transplant. My pulmonologist woders if I have PVOD (pulmonary venous occlusive disorder) also and the treatment for that is a transplant. So I don’t know if the docs at Cleveland Clinic are thinking I have PVOD, etc.
Also, Emory is close to me (I live in Greenville. SC) – my neighbor had a heart transplant there 27 years ago! He just died at the age of 79.
August 11, 2020 at 3:05 pm #26673SandyParticipant
I’m scheduled for my first appointment with a rheumatologist on August 31st because my ANA came back positive. My pulmonologist at UNC Chapel Hill wants to determine if I have an unmanaged autoimmune disease that has caused the PH. This is all so new to me and I keep researching to try to understand. Do any of you have autoimmune issues also, i.e. lupus, rheumatoid arthritis, etc.? And if so, what are you doing for it? Has treating the autoimmune issue helped to better manage your PH?
Thanks for any input or suggestions.
August 12, 2020 at 2:10 pm #26688
@sandydenn I do know that autoimmune diseases can cause PH. When trying to determine what caused a patients PH they often check for Lupus. I have RA have been tested many times for lupus but have never hit all the markers for it. My son’s PH was idiopathic (no known cause). But I do know patients who have an autoimmune disease and PH.
This makes a good topic for our PH and Co-existing sub-forum. I’m going to post this there as well to attract more attention to this important question. Hopefully one of our members can jump in and share their experience.
I will send good vibes and prayers you way on the 31st. Let us know how the appointment went.
- You must be logged in to reply to this topic.