March 17, 2022 at 12:41 pm #33696
March 17, 2022 at 2:10 pm #33699
Hi @wheeldog, yesterday, when I was at UCSD, Elizabeth said she spoke with you and that you knew me. She said I was pretty well-known around there, hehe.
That reminded me you had appointments today; wishing you a wee bit of Irish luck today. I know that you’ve had several appointments to do the last few months. Have a safe trip to and from SD.
March 18, 2022 at 8:04 pm #33716
Took the tube out, and all my tests showed everything normal…….go figure. I’ll have to go back for a CT scan and a breathing test. They aren’t sure now if I even have PH.
March 21, 2022 at 3:41 pm #33725
@wheeldog whether it was luck, a blessing or fate that brought you to this point, I’m just really happy for you. Getting the tube out and receiving “normal” test results is a big deal!
I’ll be praying for you regarding the PH part…praying that you don’t have PH and that they can determine that with 100% certainty. Is having a right heart cath an option?
Please know that whether you have PH or not, you are welcome to continue coming to the PH forums for support. One way or another you are a part of our family here and we will continue to help see you through your medical challenges.
March 21, 2022 at 6:41 pm #33732
I had a right heart cath In November of ’20. They just got the results a day or so ago and we haven’t talked about it yet. She realy doesn’t want to do another one as she feels they are too invasive. I will get the results from the tests from the tests on the 25th April 4th by phone.
Will let you know when I find out the results.
Sounds like I have had, or will get every test related to PH.
March 22, 2022 at 3:32 pm #33741
@wheeldog did you mean Nov. 2021 was when you received your heart cath? Even so, that’s a long time to wait for results. But if it was done this past November those results should be sufficient in diagnosing you with PH or not. I can understand your doctor not wanting to put you through that again if it isn’t necessary, especially when you have other serious health issues that could be effected.
It sounds like you really have a good team of doctors that you trust – that is so important! I’m keeping my fingers crossed for good results!
March 22, 2022 at 5:40 pm #33743
Guess I wrote that poorly. Actually I had it done in Nov of 2020. My doctor in AK got the results right away when he diagnosed me. They were having a hard time getting my doctors office to send them down here.
March 23, 2022 at 2:49 pm #33752
March 24, 2022 at 3:58 pm #33761Carol VolckmannParticipant
Wheeldog, you have certainly been through the wringer. Luck or not, I am wishing you the very best it can be for you!! Whether or not if you do have PH/PAH, like Colleen said, I hope you stay with the forum. You are an inspiration always looking for the positive.
March 25, 2022 at 10:29 pm #33772
Bum Day. I have always spoke highly of UCSD staff till today. Went in for a CT scan which we have all had before. They needed to stick a needle in to put the contrast in my vein. It’s never been a big deal. Every one has hit the mark the first time with little pain.
Today was a different story to say the least. Nurse takes me in gives me a poke roots around trying to find blood and says she is going to have to try another vein. Does the same thing again. Then she says “I’ll try again.” I said “No” get someone else. (A good phlebotomists once told me only give them 2 tries) So she calls in another nurse. This nurse screws up more. She tries twice and has to root around only each time she tries to put saline in. I assume she missed my vein as my arm started to bulge up each time. I am not a happy camper about now. I told them I would give another person 1 try and if it didn’t work I am leaving. I really didn’t want to leave as we drove over from AZ for these tests, but if the 5th try didn’t work I was gone.
The tech who runs the CT scanner came in and put the needle in like it was nothing and I get the scan. So why didn’t he do it in the first place or at least the second time? So after 5 times it got done.
To add insult to injury the first 2 nurses we acting like it was my fault. “Too much scar tissue, your dehydrated, your vein rolled” and on and on.
In the past at other places where I invoked the 2 try rule, which is extremely rare, they actually got someone that knew what they were doing. I have never in my entire life have ever had more than 3 times. I will continue to use UCSD as there is a lot of knowledge. However, there is no way I will ever let that crew touch me again. If they need a CT scan they are going to have to find someplace else for me to get it.
March 28, 2022 at 2:52 pm #33779
When they are new I believe there is a 2 or 3 poke rule then they are supposed to hand the needle over to someone else…preferably someone who knows what they are doing.
They do like to give excuses. Cullen has always been a hard poke. I have a keen eye and can tell before the needled hits his skin when there is going to be a problem. When he was little I was quick to ask for someone else but now Cullen let’s them dig around a bit before he says, “Um, you gave it a good go but I think it’s time to call in someone else.”.
March 28, 2022 at 9:06 pm #33781
Kinda funny…….when they called up to confirm my appointment, they asked if I was a hard poke, I told them yes. I have never been asked that question before. Now I know why they asked it. Guess I didn’t catch the “hint”. Looking back they knew they weren’t good…..that’s why they asked.
Someone who knows what they are doing can easily get me with the first poke. Someone new always has problems.
Must be really tough watching them root around in your son. I always let my wife go with our son. I would of had a hard time watching someone hurt him.
March 29, 2022 at 10:07 pm #33783
@wheeldog I truly understand how frustrating, even disappointing this experience was for you.
The hospital my son switched over to when he transitioned to adult care has been wonderful – except for their lab. Not only do they struggle to draw his blood, they have been known to also mess up the orders. For example, we told them repeatedly during one difficult poke day to make sure such and such labs were NOT included. He only needed this and that. Well, they did the labs for what wasn’t meant to be done and didn’t do what Cullen actually needed. His arm was badly bruised for over a week and he was so late to his appointment following his labs they almost had him reschedule.
Since then we try to have labs done at the little clinic near our home before his clinic appointments at the hospital. For a small clinic they seem to have no difficulties drawing Cullen’s blood and following the orders.
That being said, we can’t always avoid blood work at the hospital – sometimes it goes well but when it doesn’t….it really doesn’t!
You have been through a lot Roger and I hope these extra bumps in the road don’t happen to you often.
March 30, 2022 at 11:13 am #33785
Next time I will get a CT scan done home before I head south. I have had good luck there.
I have a particular clinic I use at home too. So far so good. What I have noticed there is a high turnover. Not sure if it’s just my clinic or if it is pretty common???
BTW Is Jen doing ok? haven’t seen her around for a while.
March 25, 2022 at 10:53 pm #33773TerryParticipant
Ha, I reckon we have all had that Rog. I suppose they have to learn on someone. I used to give excuses for them now I just watch and if they miss on second go suggest another spot . One trainee told me they are only allowed three tries . An experienced technician said that learners have a tendency to go to deep.
March 28, 2022 at 8:44 pm #33780
Doesn’t matter how many tries they are told to do. It is up to the patient (customer) as to how many chances they are going to give them. When they do screw up it makes things even worse when they blame it on the patient. It was pretty apparent they didn’t have a clue as to what they were doing.
I don’t have a problem with “trainees” doing work on me. Your right they have to learn…..especially at a teaching hospital. I get that. The guy who drained my lung was new, but the doctor was right there during the procedure in case something went wrong. I don’t think the gal who put the tube in me had ever done it before. The doctor stood right behind her guiding her every step. Then again, she was a really good looking…..he was maybe having a good time?????LOL In my case nobody who knew what they were doing and nobody was supervising them. It’s like they make the same mistake over and over and expect a different result. They need to know what they are doing wrong and correct it.
If that was my first visit to to UCSD I would never go back. First impressions are everything. They are a business and need to keep the patients happy the best they can.
The bottom line here is customer service……guess medical people call it bed side manner?
March 30, 2022 at 2:33 pm #33792
Hi @wheeldog, I’m sorry that you went through this at UCSD. In 17 years with PH, I’ve learned that one or two bad experiences can change your views. I know this was frustrating, and I would only give anyone three tries. I’m a terrible stick; I understand and warn all. Like you, I’ve had IVs infiltrate, and the fluid goes into the tissues and makes a huge lump, as you describe. It usually also leaves terrible bruises on my thin skin.
That’s no excuse; they should never try if they have no clue, especially more than one person. This is unacceptable but, unfortunately, happens to many of us. It’s not good business and not putting the patient first. Yes, we are in charge and should be telling them when to stop!
PH or no PH, please do stick around as we have come to know you and care about you and Mary Ellen both. My apologies; I’ve been on vacation, helping my mom with the estate matters of my late grandmother. I’m back now.
March 31, 2022 at 10:36 pm #33809
I have had such wonderful experiences there in the past I never worried about stuff like that. Now I am a bit “gun shy” and wonder what other departments have bum people working for them???? The solution to this is simple. I’ll get any ct scans in AK before I come down. Dr Yang was talking of a possible right heart cath……no problem…..I’ll get the guy who did my last one in AK to do another. He did a good job before.
Glad you were just on vacation. I was wondering if you were having some sort of health problem.
We are on the way home, near Beatty, NV tonight. Heading to our sons place in Sun River, OR. We will spend a few days there and wander on home. Supposed to hear my test results Monday. Will let you know what they are.
April 1, 2022 at 1:02 pm #33814
Hi @wheeldog, I hate that you experienced such a horrible time at UCSD. It makes me sad, and I’ve always spoken highly of them. But, I’m happy that you do have a plan to follow up with your team in AK once you are back home and rested.
I’m praying for safe travels for you and Mary Ellen on your trip home. Enjoy your time with your son. Will you be off a bit longer once home to rest and get your home ready again there before work picks up?
Please take care and keep us posted.
April 4, 2022 at 2:25 pm #33842
WE are at our son’s place in OR. Will probably continue on tomorrow. Hope to be home sometime next weekend. I can rest for a while as I won’t start till around mid May when road restrictions go off.
Got a call from Dr Yang. I have her stumped just like all the other doctors. She thinks I have some form of PH, but not sure which one or why I can’t breathe good……go figure?? She did tell me to stop the Tyvaso for 3 months and get another echocardiogram in three months.
April 4, 2022 at 2:29 pm #33844
@wheeldog if you feel comfortable doing so maybe ask your doctor if he has or can consult with PH doctors who he might know from other facilities, even states. Cullen has always been “unique” so his doctor often reached out to others to help him brain storm and look over results. It might help if he can do this.
April 4, 2022 at 2:53 pm #33851
Kinda doing that now. The next step when I get home is to get a blood test for Valley Fever. I used to spend a lot of time out in the desert. That has never been ruled out.
April 5, 2022 at 11:27 am #33860
Hi @wheeldog, if you stop Tyvaso, which medications will you take for those three months? How do you feel about all of this? I, too was, had the doctors “thinking outside the box.” I saw Dr. Channick at UCSD when I found him, then moved to Boston. I then flew so that he could see me there, too. He’s not back in CA but at UCLA. Please LMK if you want me to email you his contact info at UCLA. He’s been beside me and my “go-to” with any questions that I’ve had for other PH docs that I am under. I’ve also sent him PHriends that other doctors may have been stumped on.
Focus on your travels, and once you’re home safe and settle back on your homefront, I’m happy to see what I can do to best support you. You’ve certainly been through the wringer, my PHrend.
April 5, 2022 at 10:18 pm #33865
I take Tadalafil twice a day. Stopped Tyvaso for a day and got short of breath. Started back up this morning. My wife got nervous and didn’t want me to stop till we get home. She was worried something might happen in some remote place in Canada. I have a SPOT tracker that we carry. It works off satellites not cell service so works anywhere. It has an emergency button that calls emergency crews.
I got short of breath loading up and putting things away for 2 days last week.. Never seemed to get over it till today. Maybe I got dehydrated??? We have been at some high altitudes up to today. Our sons place is over 4,000 ft. Stopped at 7,500 feet and put on the ox meter. We were both in the low 90’s. For some reason when I get short of breath my oxygen levels stay up……go figure.
Thanks for the doctor information. I will pass on it for now, maybe will need it later. My goal is to make it at least a month without a doctors visit.
April 7, 2022 at 10:44 am #33874
Oh, @wheeldog, I agree with Mary Ellen. I, too, suggest waiting until you’re home safe and rested before you try stipping Tyvaso again. Are you to report to the doctor what happens when you stop it? Being short of breath already makes me nervous for you.
I hope that if this continues after you ty once home, you will contact some doctor and not go without treatment if you notice an increase in breathlessness. The altitude and hydration can undoubtedly play a factor, but that is my concern since it was noticeable that quickly.
Yes, I understand you want a break from doctors after a hectic few months. Stay safe, and keep us posted when y’all are home safe.
April 7, 2022 at 11:37 pm #33889
Doing better now. Back to where I normally am. I think it was a combination of getting dehydrated in the heat……took about 3 days to pack everything away. Then getting into higher elevations. We should be home in 3 more days.
Got 2 doctors appointments for sure……..maybe 3??
April 8, 2022 at 3:32 pm #33891
Good to hear @wheeldog! Dehydration can really do a number on the entire body. It’s a big issue for my son because of his kidney disease. When he starts to feel bad or have any kind of symptoms the first thing he does is grab a bottle of water because more times than not his issues are triggered by dehydration.
Have a safe journey home. May gas prices be the only painful thing you have to deal with on the way.
April 8, 2022 at 6:37 pm #33896
Hehe, @colleensteele, ain’t that the truth? 😀
@wheeldog, I’m happy to read that you are feeling better after some time to recover from the heat, dehydration, and altitude. Those aren’t exactly the best combos for our bodies. Please be safe in your travels, as I know you and Marry Ellen is ready to be back home and settled in after unpacking.
Try and rest in between making those new doctor appointments.
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