Hypertension Part Deux
I took Erik in for a blood pressure recheck today, and it was once again too high. When I asked how high, I was told, "Not extremely high, but it's pretty high."
Uh.
Pretty high?
Please be more specific. Like, explode your eyeballs high or experiencing mild road rage high?
After I was given a very polite brush off and told I could come back in yet another month, I explained that I have watched Erik's WS peers undergo surgery, have strokes, and take antihypertensive medication. I explained my fears that we have not gotten very accurate readings in the past and that I suspect he has been hypertensive for a while. I was told "not to worry too much."
I calmly explained that I wasn't "too worried," but there is certainly a lot I don't know about what's going on in Erik's body, and my alarms have been going off. I explained the issue of renal artery stenosis and the fact I have never seen images of his kidneys. They haven't even done all of the recommended lab tests on him since his diagnosis, despite the fact I gave them a list of them. I recently gave them the list again. Although I adore Erik's pediatrician, I would give my right arm to have someone anywhere on the West Coast who could tell me what the plan should be and reassure me that Erik was in good hands. I'm sick to death of being told I'm the "expert" by physicians who admit they know next to nothing about this syndrome. I have a sneaking suspicion she knows very little about elastin arteriopathy, which 100% of people with WS have, or the high incidence of renal artery stenosis. See, my kid is 4, and his arteries are already hard. Sure, the the last couple of readings could be nothing, but color me a little concerned and in need of more information. I don't believe I am overreacting in the slightest. I was told they would start a referral to the cardiologist. I thought that was a bit over the top but decided I would at least like to speak on the phone with a specialist. Just for a little friendly advice.
I called the children's heart clinic here and identified myself to the woman who answered the phone. She brightened when she heard Erik's name, and I found myself smiling. The cardiologist is going to call me tomorrow, and I hope she can tell me what the best next step should be. I can certainly wait another month for another reading. I can schedule him immediately for a scan. I can stand on my head and sing "Sweet Home Alabama" in my brassiere and panties. I don't care what the plan is. I would just feel better being told what to do for once by someone who uses an authoritative tone, not the faint, buoyant whine of question marks and a pause for my response.
I just want someone else to take the reins for once.
Uh.
Pretty high?
Please be more specific. Like, explode your eyeballs high or experiencing mild road rage high?
After I was given a very polite brush off and told I could come back in yet another month, I explained that I have watched Erik's WS peers undergo surgery, have strokes, and take antihypertensive medication. I explained my fears that we have not gotten very accurate readings in the past and that I suspect he has been hypertensive for a while. I was told "not to worry too much."
I calmly explained that I wasn't "too worried," but there is certainly a lot I don't know about what's going on in Erik's body, and my alarms have been going off. I explained the issue of renal artery stenosis and the fact I have never seen images of his kidneys. They haven't even done all of the recommended lab tests on him since his diagnosis, despite the fact I gave them a list of them. I recently gave them the list again. Although I adore Erik's pediatrician, I would give my right arm to have someone anywhere on the West Coast who could tell me what the plan should be and reassure me that Erik was in good hands. I'm sick to death of being told I'm the "expert" by physicians who admit they know next to nothing about this syndrome. I have a sneaking suspicion she knows very little about elastin arteriopathy, which 100% of people with WS have, or the high incidence of renal artery stenosis. See, my kid is 4, and his arteries are already hard. Sure, the the last couple of readings could be nothing, but color me a little concerned and in need of more information. I don't believe I am overreacting in the slightest. I was told they would start a referral to the cardiologist. I thought that was a bit over the top but decided I would at least like to speak on the phone with a specialist. Just for a little friendly advice.
I called the children's heart clinic here and identified myself to the woman who answered the phone. She brightened when she heard Erik's name, and I found myself smiling. The cardiologist is going to call me tomorrow, and I hope she can tell me what the best next step should be. I can certainly wait another month for another reading. I can schedule him immediately for a scan. I can stand on my head and sing "Sweet Home Alabama" in my brassiere and panties. I don't care what the plan is. I would just feel better being told what to do for once by someone who uses an authoritative tone, not the faint, buoyant whine of question marks and a pause for my response.
I just want someone else to take the reins for once.
Labels: doctors, hypertension, Williams syndrome
posted by Nancy at 4:16 PM
11 Comments:
Your have no bones about pushing for answers. Do not sit and wait if you feel at uncomfortable about the answers you are getting. Better to get more information than less when you have huge underlying possible things going on with your son. I can't even imagine how tiring it must be to be the expert when you shouldn't be. BUT...you are the best advocate that your son has and you should feel no discomfort about wondering if you should push for more tests (that are already recommended) or faster appts. or whatever.
Hey babe.... I hope I didn't come across too bossy. I know nothing about the situation you are in and how much energy it takes to get through the day sometimes.
Where my strenuous email comes from is working in Rochester, Minnesota, home of the Mayo. People come from all over the country and all over the world because they didn't get enough answers at home or any of the multiple doctors/hospitals they visited. I would just hate for Erik's kidney's and for you tender heart for something to be going on and not recognized because the doctors were not familiar enough with WS. People ended up getting answers and direction merely because they pushed enough.
I love you.
Jen
I am waiting anxiously! Thanks for sharing and keeping us posted!
In our thoughts and prayers,
Dawnita~
Jen, you certainly know the medical field, and I value your opinion. I love you oodles. Thanks for your comments. They mean the world to me, friend.
AMEN Sista!
I totally get it and am so grateful for a WS clinic so near my home. I was totally in the same boat until a year and half ago! I am not constantly holding my breath and twisting the doctors arms for more information. His regular pedia is totally fine with us getting all his care at CHOP. It's less work for him.
I did every test that was recommended over the past 2 years, and now feel like I can breath easy for awhile. WOrth it.
When they take my BP, they give me numbers. That sort of takes the subjectivity out of "pretty high." Not sure why they should be different with pediatric medicine, though kids have different heart rates - probably BP as well.
Jen is right on! I hate to say this, but seriously, you might need to A) have a sit down with the pedi or B) switch.
Even just leaving the hosptial for BRady's surgery, he wasn't taking lot of fluids and dehydration is a huge thing with WS. I wasn't too keen on leaving on Sunday like originallty asked of me... um, he was just on fluids last night and you are considering me leaving in three hours?? I felt like I was "talking down" to the nurse practioner, but I didn't feel I had a choice. I am sweet as pie, but I WILL get what my child needs. :)
They changed their tune pretty quick when the surgical consult was concerned about the fluid intake.. uh, hello?!?! You always have to be on top of everything.
Let us know what's going on~~
Yes, he needs to get an ultrasound of his kidneys asap and see a pediatric neph. In the instance of high BP it is the kidneys, not the heart, so the cardiologist would be less helpful in that arena. All of this is totally un-invasive and will lead to some answers. Quite often our kids have bouts of high bp without a direct obvious cause. Over the yrs since Avery's hypercalcemia, hers is going DOWN. That in itself is a miracle.
Amy
Living in small town USA I fight this battle every day. His doctors know bits and pieces of WS but I am always the one asking the questions. It is exhausting and you do deserve a break.
Your Sweet Home Alabama reference cracked me up.
Glad you are getting the kidneys checked out...that's next on our list as well.
I'm sorry you're not getting any answers and you're the one having to point everything out! I hope this cardiologist is someone with a little more information and can take the reins!
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