Aortic valve replacement following Hodgkins and radiotherapy

[KitsP]

Is there anyone out there who has had aortic valve replacement surgery following radiotherapy for Hodgkins Lymphoma (or radiation to the chest for another cancer?). My surgery is imminent and I'm looking for someone who's already been there and come out the other side!

[Mary_Janet]

Good morning KitsP

I have not had Lymphoma or radiotherapy but did have my aortic valve replaced last May. So I don't have the same experience as you. I have been following this group so October and find it invaluable. I have not read about anyone having the same experience as you but someone may yet pop up. I am sure that your surgical team will be taking the radiotherapy into account in your recovery.

My surgery was urgent and I did not have a routine pre op work up, it all happened the day before surgery in the hospital, then then I met the consultant followed by his registrar, the anaesthetic team, a research nurse and the nurse practitioner. On each occasion I learnt more and collected more information and had more concerns answered. Although I was very scared the night (who would not be) before I felt remarkably calm. After I said farewell to my visitors I was kept busy having special showers and hair wash.

After the surgery I remember very little for the first forty eight hours. Many people are ready to go home after a few days but in my case I was transferred back to my local hospital for further specific treatment.

On discharge you will be very tired and its a case of baby steps. You will be given lots of information about the importance of taking plenty of rest but also going for short walks and gradually building up your activity. You will have some good days and some that are not so good. Don't be surprised if you find you are a bit fed up and even tearful , you are going through something major and most of of us have down days after the surgery.

There is no driving for six weeks and no lifting - nothing heavier than a filled kettle for several weeks. I was seen by a physio post surgery to help with deep breathing and walking up straits. Pain relief is important, if your pain is controlled you will feel better and move better.

I had a mechanical valve fitted so am on life long warfarin, in my case it took a bit of time for my INR to settle down but has now, there are some food/drink restrictions but it's a more of a nuisance and a small price to pay. The valve clicking appeared quite loud to start with but now I only hear it as I go to sleep or in the morning and find it reassuring.

You will be referred for cardiac rehabilitation classes. Our course was ten sessions and I found it invaluable , meeting others who had had a variety of cardiac events was very helpful. We were there for information and support both from the staff but also from each other. At the sessions we did exercise in a controlled , safe situation and it really helped my confidence.

I am sorry I cannot give you the information that you specifically requested but hope this help. You say that your surgery is imminent , let us know how you get on and keep in touch.

All the best

Mary

[KitsP in reply to Mary_Janet]

Dear Mary,

thank you for your amazing response. It really means a lot when someone takes the time to give such a detailed answer. Everything you've told is really helpful. I'll let you know when it happens and how it goes.

Best wishes

Kate

[Mary_Janet in reply to KitsP]

Glad you found it helpful. Let us know how you get one. Don't feel anxious about asking questions or telling us how you feel as it really helps..it's a really great forum and has helped me a lot. Best wishes for the next few weeks.

[LauraUK]

Hi Kate

Wondering how you are doing now I suspect post op? I am also due for double valve replacement shortly also due to Hodgkins. I have been advised to go for mechanical due to my age (47) although not to happy about going onto Wafarin as I play quite a bit of tennis and other exercise so bleeding risk is not great. Hope you have recovered well. would love to hear from you. Laura

[KitsP in reply to LauraUK]

Hi Laura,

Good to hear from you. I still haven't had my op! I've been putting it off because I was so terrified. It's due to happen in October now and I'm feeling more psychologically ready. I'm 52 and have opted for a tissue valve because I don't want to be on warfarin for life. My aim is to be drug free. Apparently the tissue valve I'm having is especially made to accommodate another aortic valve if necessary, which would be replaced via TAVI (through a vein at the wrist or groin). I'll find out exactly what it's called and get back to you. Where are you having your op?

If you're interested I've found a Facebook support group for Hodgkin survivors with late effects. It's been a huge source of support and information for me.

Kate

[LauraUK in reply to KitsP]

Hi Kate, have just left my cardiologist who I was hoping would give me a reprieve until Jan, sadly not he has said sooner than later and like you utterly petrified! I don’t really have the option of tissue as I’m doing mitral & aortic. My cardiologist says not much option with mitral and to be honest I don’t think I want to face another operation after this. Fabulous if they can do it 2nd time through the groin. I’d love the FB page , been amazing for almost 20 years and now falling apart from post side effects. May beat you to it now ! Thanks for info

[KitsP in reply to LauraUK]

The Facebook page is Hodgkin's disease survival repercussions from 1960-1990's only. Let me know when your op is and how you get on. Mine is the end of October. Sending you best wishes and strength.

[LauraUK in reply to KitsP]

Fab thanks, have sent a request to join. My op is on Sat so have flown back in to UK and am now preparing myself, pre-op in London on Wed which I'm sure will be pretty informative and then D Day on Sat!

Lx

[KitsP in reply to LauraUK]

My pre assessment is on Wednesday too in London! Which hospital are you with? I will be thinking of you on Saturday...good luck with everything. I know how scary it is, but it will be such a relief to get it over and done with and be able to get on with the next chapter of living! X

[LauraUK in reply to KitsP]

I'm doing my Pre op at the Harley Street Clinic and the op at The Heart Hospital & you? Are you symptomatic? I think that's what's been quite hard is that I'm not / haven't been really symptomatic. Very active in tennis, run etc so don't feel like I need, however clearly I do based on what my heart shows. What hospital are you at? x

[KitsP in reply to LauraUK]

I'm at the Brompton. I am symptomatic...get very out of breath easily. The fitter you are the better though so you are in a good position. Let me know how it all goes! X

[Sammycat]

Hello - I have only just seen your post but am extremely interested in how you got on. I too had Hodgkin’s disease in the early 90’s and have been told my heart condition is totally related to the treatment I received. On 24th October I had an AVR and a bypass. I opted for the tissue valve as did not want to be on warfarin.

Please let me know how you got on

Xx

[KitsP in reply to Sammycat]

Hi Sammycat, glad you've got your op over and done with! How are you doing? Still very early days! How did it go? I still haven't had mine...it was supposed to happen in October, but got postponed at the last minute. I think it's because when I was going through the pre op tests they found my stent had blocked up and they had to open it up again. They want to wait a bit to see which symptoms were due to the blocked artery and which are due to valve. I will be having a tissue valve too as I definitely don't want to be on warfarin. Do you know about the Facebook group for hodgkins survivors? It's a brilliant source of info and support. I felt so alone in all this before I found it. The full title is in replies above. Look forward to hearing how you're getting on xx

[Sammycat in reply to KitsP]

Hi - How awful for you to have your op postponed. You get all psyched up and then nothing......though it sounds that perhaps it is better for them to know exactly what they are dealing with before they open you up. My recovery is slow and very painful but 90% of my pain is due to the thoracic jacket I have to wear 24 hours a day for 6 weeks. I hate it with a vengeance and feel it is stopping my progress as everything is such an effort with this awful thing - not only is it viciously painful but cumbersome too. I do feel that if only I could rid myself of this, I would be not only virtually pain free but more able and more inclined to do things.

Yes, following your earlier post, I have joined the FB page you mention but it seems to be primarily American and I struggle to understand some of the language/abbreviations used.Very interesting though.

How long ago did you have Hodgkins and what other legacies apart from heart problems do you have as a result? I was diagnosed in 1991 and had chemo and radiotherapy. Been clear of treatment for 26 years but had a hip replacement 5 years later and various other related health issues . Aortic stenosis diagnosed about 6 years ago - caused by radiotherapy.

xx

[pjbird2000]

Any updates?