Kathy McCain
Well-known member
Deanne,
You are in my thoughts and prayers! Hope you can get things sorted out!
God bless
You are in my thoughts and prayers! Hope you can get things sorted out!
God bless
off to Cleveland Clinic
- Thread starter briansmom
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ctyguy
Well-known member
Im sure you going to get answers. Dr Svensson is a brilliant surgeon. There are folks on here who were fortunate enough to have him who Im sure will attest to that. You guys have been through so much already, Im praying for strength for the both of you.
Mileena46
Well-known member
Throwing my prayers in for a safe trip and answers! GOOD answers!
Mileena
Mileena
hall
Well-known member
Praying you get your answers at CC.
Sorry to hear. Hope also, that you get answers. Thinking of you all.
barb
Well-known member
Hi Deanne,
I hope you made it to CC and have much testing behind you and Brian by now. I hope Dr. Svensson is able to give you the answers you need. I'm wondering if you will end up seeing Dr. Stewart (my cardiologist). He is very nice and thorough. I'm on the other side of town (west) and if I weren't dealing with a house full of flu I'd drop by and say hi. Please call on me if you have any questions you think I can answer while you're in town. My e-mail is [email protected]. I'm sure it has been an exhausting day for you both. Prayers for all the best out of this visit.
I hope you made it to CC and have much testing behind you and Brian by now. I hope Dr. Svensson is able to give you the answers you need. I'm wondering if you will end up seeing Dr. Stewart (my cardiologist). He is very nice and thorough. I'm on the other side of town (west) and if I weren't dealing with a house full of flu I'd drop by and say hi. Please call on me if you have any questions you think I can answer while you're in town. My e-mail is [email protected]. I'm sure it has been an exhausting day for you both. Prayers for all the best out of this visit.
I'm assuming that you made it to CC safely. Sure hope that all the specialists can come up with a good treatment plan to get Brian back to the point where he can start getting healthier. So glad to read that Shane is recovering nicely! All of you remain in my prayers.
RvUsa
Well-known member
Thoughts and prayers for you guys. I hope all works out for the best! Godspeed!
I had a quick note from Deanne, they made it to CCF and had a long busy day of testing, docs ect. I'm sure she'll update when she gets time, but I wanted to at least let everyone know they DID get to go and everything is going according to their schedual
briansmom
Well-known member
Finally got an internet connection and am able to post an update.
We have seen a lot of doctors and he has had a lot of tests, they just keep adding them on. Unfortunately almost every doctor says that Brian is a "very complex case". Really not what I wanted to hear from the really big brains
As of this afternoon they are leaning toward some type of arteritis - probably Takayasu's. Unfortunately, Takayasu's is hard to definitively diagnose without an artery biopsy and for some reason they can't find the pathology from his original surgery. A diagnosis of Takayasu's would mean that he would have to go on steroids. They also discovered that his renal artery is stenosing again. They want him to have renal artery bypass so we are meeting with a vascular surgeon as well as Dr. Svensson tomorrow. I think one of the reasons they are pushing for the bypass is that they will get a renal artery biopsy that way.
The doctors here have really been amazing. In almost every case we have met with the department head and each doctor has spent from 1-4 hours with us. They are all very determined to get us a diagnosis and a plan.
Brian is continuing to have bad headaches but they have tested for carotid artery obstruction, brain bleeds and brain artery inflammation, so at least the headaches aren't from something dire.
They are recommending that Brian have the renal bypass done here because vasculitis is such a specialized field. That opens up a big can of worms with insurance authorization, doctors holiday schedules, will the artery stay open long enough to make those plans, etc.
As of now, we are scheduled to go home tomorrow night. The main 2 docs are out till Tuesday and have been communicating with each other via email and are planning to review the rest of his results on Tuesday and call me and his cardiologist in San Diego with their recommendations.
thank you all so much for your prayers and wishes. You really do give me a lot of extra strength. The doctors here have also been very complimentary about my knowledge and perseverence. Sooo, with God's help, we will continue to persevere.
We have seen a lot of doctors and he has had a lot of tests, they just keep adding them on. Unfortunately almost every doctor says that Brian is a "very complex case". Really not what I wanted to hear from the really big brains
As of this afternoon they are leaning toward some type of arteritis - probably Takayasu's. Unfortunately, Takayasu's is hard to definitively diagnose without an artery biopsy and for some reason they can't find the pathology from his original surgery. A diagnosis of Takayasu's would mean that he would have to go on steroids. They also discovered that his renal artery is stenosing again. They want him to have renal artery bypass so we are meeting with a vascular surgeon as well as Dr. Svensson tomorrow. I think one of the reasons they are pushing for the bypass is that they will get a renal artery biopsy that way. The doctors here have really been amazing. In almost every case we have met with the department head and each doctor has spent from 1-4 hours with us. They are all very determined to get us a diagnosis and a plan.
Brian is continuing to have bad headaches but they have tested for carotid artery obstruction, brain bleeds and brain artery inflammation, so at least the headaches aren't from something dire.
They are recommending that Brian have the renal bypass done here because vasculitis is such a specialized field. That opens up a big can of worms with insurance authorization, doctors holiday schedules, will the artery stay open long enough to make those plans, etc.
As of now, we are scheduled to go home tomorrow night. The main 2 docs are out till Tuesday and have been communicating with each other via email and are planning to review the rest of his results on Tuesday and call me and his cardiologist in San Diego with their recommendations.
thank you all so much for your prayers and wishes. You really do give me a lot of extra strength. The doctors here have also been very complimentary about my knowledge and perseverence. Sooo, with God's help, we will continue to persevere.
Deanne:
Thanks for the report. Sounds like you've both been very busy.
Keep up the reports! I'm keeping y'all in my prayers.
Thanks for the report. Sounds like you've both been very busy.
Keep up the reports! I'm keeping y'all in my prayers.
Lorimacm
Well-known member
Deanne, You are a strong woman and an amazing mother, I pray for your continued strength and a positive outcome for Brian. Thanks for the update.
Marguerite53
Premium Level User
Hi Deanne. Glad you are pleased with your care and attention at CCF. I honestly don't know how you do it -- you are all so incredibly brave.
Please know that you are in my thoughts and I'm reading and watching for your posts as you travel through this latest journey.
Keep the faith. Great brains love complexity -- they thrive on it. Be comforted that these professionals are probably taking Brian "home" with them and puzzling over him, probably in their sleep.
My best wishes to your son.
Marguerite
Please know that you are in my thoughts and I'm reading and watching for your posts as you travel through this latest journey.
Keep the faith. Great brains love complexity -- they thrive on it. Be comforted that these professionals are probably taking Brian "home" with them and puzzling over him, probably in their sleep.
My best wishes to your son.
Marguerite
my oh my, all I can add is that your family is in my prayers, and hang tight and strong.
NikD
Member
All the best Deanne. You're in great hands over at CC. Stay strong!
Deanna, I'm so glad you were finally able to find a connection to let us know how things are going at CCF for Brian and you. I even did a search for you thinking I had missed an report you had made.
I'm glad they have been giving you excellent treatment. I pray those who make your insurance calls will be as well informed as you!!!!!
Our experience with the clinic is that they are very good about seeing that you receive reports and lab results. Have you registered on "My Chart"? If they haven't introduced you to that you could ask about it.
I'm glad they have been giving you excellent treatment. I pray those who make your insurance calls will be as well informed as you!!!!!
Our experience with the clinic is that they are very good about seeing that you receive reports and lab results. Have you registered on "My Chart"? If they haven't introduced you to that you could ask about it.
Great to hear from you Deanne & to know that the drs there are as wonderful & as knowledgeable as we have heard.
Keep us posted & tell Brian he's in my prayers as are you & the rest of the family!
Keep us posted & tell Brian he's in my prayers as are you & the rest of the family!
briansmom
Well-known member
We are at the airport and I just figured out that I can access VR on my blackberry - way cool.
We met with the vascular surgeon and he was great but scared the snot out of me. First he is really recommending the renal artery bypass. He wants to use one of the arteries that feeds the spleen. He said it is about a 3 hour surgery and brian would be in the hospital for 3-5 days. Of course he said that it is very specialised and should be done at CC. That was not the scary part. He kind of freaked out about brian's coronary bypass that has gotten very enlarged. There is also something on his aorta from his LVAD removal - it kind of looks like a nose sticking out - and the vascular surgeon seemed very worried about that. He knew we were going to meet with dr svensson so he said he was sure dr svensson would talk about it.
Now I'm thinking that brian also needs ohs!!!
Finally get to meet with dr svensson and it was our shortest appt - about 5 minutes. He says he doesn't have much to add. I ask specifically about the bypass and "nose" and he says oh that's from the LVAD and we don't do anything about large bypasses until they are twice as big as brian's. I just about hugged him. That is the same thing that his surgeon at home said.
I will post more next week when I talk to the docs at CC again.
Thanks Barb for the tip about mychart. I will look in to that.
We met with the vascular surgeon and he was great but scared the snot out of me. First he is really recommending the renal artery bypass. He wants to use one of the arteries that feeds the spleen. He said it is about a 3 hour surgery and brian would be in the hospital for 3-5 days. Of course he said that it is very specialised and should be done at CC. That was not the scary part. He kind of freaked out about brian's coronary bypass that has gotten very enlarged. There is also something on his aorta from his LVAD removal - it kind of looks like a nose sticking out - and the vascular surgeon seemed very worried about that. He knew we were going to meet with dr svensson so he said he was sure dr svensson would talk about it.
Now I'm thinking that brian also needs ohs!!!
Finally get to meet with dr svensson and it was our shortest appt - about 5 minutes. He says he doesn't have much to add. I ask specifically about the bypass and "nose" and he says oh that's from the LVAD and we don't do anything about large bypasses until they are twice as big as brian's. I just about hugged him. That is the same thing that his surgeon at home said.
I will post more next week when I talk to the docs at CC again.
Thanks Barb for the tip about mychart. I will look in to that.
Have a good trip home, I'm glad Dr svensson was able to make you feel better so that is one less worry with so much on your mind. I'm glad you were able to get to CCF and get some answers and start a plan.
