My Congenital Heart Consult

[Scottie]

Hi Folks ....I saw my Congenital Heart Consultant a week ago on that dreadful day ..Tuesday 11th September...will any of us ever forget that day?...It was when my husband and myself were driving home that a news flash came over the radio about the first plane hitting the building....we arrived home and put on the TV ..we were so shocked and appalled all week we have hardly given my consult a thought ...however ....
the good points first ...
although I can't say I'd warm to the Consultant..she was very efficient and I do feel she does know her stuff...and I do trust her opinion ..
the not so good stuff
She feels that my stenosis(sp?) is bad enough to have a closer look ...she wants to do some angioplasy and a cardiac cath test soon...she would not commit to whether this might lead to a new valve ..she wants to wait and see, feeling I'm on the "cusp".
She would not give me any details about how much ,that you folks seems to get from your Drs ..she told me that I didn't need to know that ...
She said she would be reluctant for me to have surgery inless it was desperate as this would be my fourth open heart surgery and because of scarring damage and congenital defects.
The only thing that really concerned me was her dismissal of how I was feeling ...when I told her how fatigued I was feeling all the time she said that this would not be from my heart ..I was confused about this but she was quite dismissive about my ever increasing tiredness ..she told me I was getting older (I'm 41).
When she asked about physical exercise and I told her how breathless I felt when doing any and so I was walking less she said she would need a measure .eg. on the treadmill before she would take any breathlessness into account ..I was a bit taken aback about her attitude to how I was feeling ...anyone got any input into this ?
Sorry to take up so much time...I felt last week was not the time to bother anyone ...
Cindy I'm so glad your Dad is recovering well and Peter well done on your recovery !
Take care all ..I read your posts often and have been praying for you all .
Scottie

 

[Peter Easton]

Sound to me like second opinion time. The dismissiveness seems a little strange. Lack of bedside manner is one criterion in retaining or ending services of a practitioner, along with necessary technical competence. Good luck and keep plugging -- and keeping us posted!

Peter

 

[Scottie]

Peter

Peter

Just a note to point out that here in the UK we don't retain or dismiss Drs ...Surgeons or Consultants ..although we don't pay for our medical costs (excepts through a National Insurance Stamp) we have little,or no choice in where,when or whom we see .
Thanks for the reply though
Scottie

 

[Mara]

Scottie

Scottie

Hi Scottie-

Do I get to gripe about the NHS now? The NHS is my main concern if and when David and I move back to Glasgow. I know I will get in a fight with the docs and tell them they are jerks. We have it so easy over here where the docs work for us, not the government...there is a lot better care when the patient is footing the bill and not the governement.

you know fatigue was my main symptom, my cardio said it was because of the stenosis of the valve. The surgeon could not believe how stenotic the valve was after my surgery and was really surprised I had not been passing out.

I don't know if you can do it on the NHS (after Jonathan's troubles, and David's aunt's troubles) but insist that they do an echo and/or TEE. I hope you can get a second opinion. I hope you can go in there and demand the healthcare you deserve!

I am on your team!
Mara

 

[Peter Easton]

Hmmm -- you're right. Situation is fundamentally different. So there is no such phenomenon as second opinions in NHS? In my little experience, people figure out a way, somehow, to work any system in order to humanize it and get some options out of it. What are these under an NHS regime (which must have other virtues to go along with these faults)?

Peter

 

[ticktock]

Scottie
You are really in a pickel. NHS is not perfect huh? Neither is our system, but at least we can get second opinions. I insist on getting my own copy of all test results, and then, if Im not happy with the Docs comments, I research them myself. Would that be possible for you??

Which valve is stenotic, did I miss that? I had Aortic Valve Stenosis and have indeed had 4 heart surgeries. One of the greats did my last one, Dr. Denton Cooley in Houston, Texas. I do have to admit that I had trouble finding a Doc to operate on me. Wish you were on this side of the pond.
mindy

 

[Nancy]

The doctor sounds a "cold fish", however---my husband Joe just had his third heart surgery and it was extremely hard to get his cardiologist to agree to the surgery because of the risks, scar tissue and adhesions. We found that Joe had to be almost to the point of complete heart failure, and possible body system failure, before he would commit to it. So I understand your doctor's reluctance to agree to surgery since this will be your fourth.

In conversations with my husband's cardiologist, he felt that he could use medication to relieve the ever increasing CHF causing extreme fatigue in my husband. The cardiologist is a very fine cardiologist and an extremely compassionate person so I know that it was concern for my husband's survival which drove his reluctance.

When it became apparent that diuretics, even the most powerful, in very heavy dosages, just weren't keeping up with the fluid backup in his lungs and heart, the cardiologist then agreed to the surgery. I had to insist also that my husband explain in great detail, just how he was feeling, because he's not much of a complainer. Joe also explained that he didn't want to live the way he was living, he couldn't do much of anything but sit on the sofa and sleep.

I think when the cardiologist realized that Joe wanted to take the risk involved to improve his life, it helped relieve some of the responsibility from the decision.

Maybe this will explain some of the dismissive behaviour. I'm sure the doc isn't stupid and knows that these symptoms are from your heart, but is trying to stall you as long as she can. I think they weigh the risk factors and if you are extremely sick, it makes more sense to take the risk. The other problem is that perhaps there isn't a surgeon adept enough or willing enough to do the fourth surgery.

In talking to the surgeon after Joe's surgery, he told me that scar tissue was definitely an issue, he had to go very slowly. But he's a supreme surgeon and everything came out fine.

I don't know if this helps, but it might shed a little light.

 

[ticktock]

Nancy
I guess the scar tissue is a very real concern, and a third time through the sternum is bad enough. My Surgeon explained that the tissue becomes like spider web, and none will hold a stitch. That includes some of my heart muscle. However, Dr. Cooley did my 4th surgery through the back/side. My scar begins just under my left breast, goes under my arm and up my back. Two ribs are broken and the chest opened that way. It can be done, but I would want the very best for sure.

Quality of life was the issue to me, and at 44 years old, I wasnt ready to give up. But, I didnt want to continue with the quality of life that I had. Its tough. Its an impossible decision. There does come a point, as evidenced by your husband, that surgery is preferable to daily living as it is. A very individual issue.

 

[Nancy]

Forgot to mention that Joe's third surgery was done through the side also, which was perfect for what they had to do, however, he had also had lung surgery there, so there was no escaping the scar tissue issue (Oh my gosh, that rhymes). His chest is really a MESS.

 

[Peachy]

NHS

NHS

Hi Scottie

I'm doing not too badly with the NHS (so far anyway). I'm now on the waiting list for my AVR surgery and it should be around Springtime. I was told at my annual checkup that according to their figures from the echoscan that surgery would be needed very soon. However as I didn't have any symptoms then they would leave it just now as I wouldn't get any benefit. I was asked to come back in a year's time but get in touch if I felt I was getting symptomatic. Five months after this in July of this year I went back to the hospital as I was getting noticably breathless when I was doing any exercise and getting dizzy spells. Fatigue is another problem. I have just been to see the surgeon last week and I am now on the waiting list. He has agreed to give me a pig valve even though he suggested a mechanical would be best. I was ready with my facts and figures to argue for a pig valve but didn't need them. Just keep hassling them otherwise you will get nowhere. I even got a quote from a private hospital in Glasgow just in case I had problems with long waiting lists etc.

Peachy

 

[Jan]

Valve replacement the NHS way

Valve replacement the NHS way

Hi Peachy and Scottie
good to hear things are not to bad for you both, I had my catheter test done on Tues 18th and thankfully no artery problems showed up, I contacted the surgeons secretary to arrange an appointment to discuss which valve would be best for me, I was told that it would discussed on the pre op test day which is the day before surgery (I could hardly beleive what I was hearing) I think I would prefer a mechanical as the thought of future surgery does scare me but it would be nice to discuss options. I am on the waiting list and can expect surgery Dec or Jan so it,s not to far away.
I have just read in our local newspaper that the Liverpool NHS Trust have been awarded extra funding of £300.000 to pay for private treatment for 40 paitents who have been waiting for 12 months for bypass or valve replacement, they are too be sent to Health Care International n Glasgow for surgery I wish all these people the best of luck, waiting 12 months must have been a nightmare I,ve only been waiting since June and that is bad enough.
I send my best wishes to all who are recovering from surgery, you are all a great inspiration to us who are waiting ,reading the positive thoughts of all members is such a help
Many Thanks To You All
Jan