Mother of Homograft transplant tennage son

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K

karen04

Hello all!

So glad I found this site, it has helped me incredibly.

My 16 year old son is due to have a pulmonary valve transplant in the next 3 months and to say I am worried is a slight understatement!! We live in manchester, England in the uk and my son was born with pulmonary stenosis, operated on at 6 weeks old with a balloon catheter which was very successful, he was discharged 4 years ago from the childrens hospital as the doctor said he was 'fine'. Anyway about a year ago I became increasingly worried as he was getting short of breath easily and was complaining of dizziness and chest pains, but at the time his girlfriend had just been knocked down and killed, so I thought he was having panic attacks but being the paranoid mother I am! took him to the GPs who, Thank God, took his complaint seriously and referred him straight for an echo which revealed his pulmonary valve was totally not working properly and the right side of his heart had begun to enlarge. They referred him for surgery which he is now on the waiting list for and really could do with some advice.

Basically, I kinda know what to expect surgery wise thanks to the tremendous photo diary on this site (haven't showed my son this though...or told him about it!) but would like to ask, as a mother, is there anything I can do for him pre and post surgery. Of course I will never leave his side, and I understand that he will be quite poorly post op.

He is still being cared for under paediatric care so he will be at a childrens hospital (although he is nearly 6 foot! he is still a child at heart)

Also, I know I may sound ignorant and I am sorry, but with him having the human valve transplant will he need anti rejection drugs?? I know I could ask my Dr but my son is always with me and he is already scared and I find the best people to ask are people who have actually been through it.

Thank you all

Much Love

Karen (mum!)
 
Hi, Karen!
I'm glad you found us, but I'm sorry it had to be under these distressing circumstances. We have many heart moms that belong to VR, and one member has a son with a history that sounds similar to your son's. Hopefully she will be by in a bit with some advice and experience to share with you.

Has it been decided positively that your son will receive a homograft valve? I don't know too much about them, so I will let someone else answer your questions concerning them.
 
Thank you Mary,

He was put on the waiting list the beginning of December and they said the maximum wait is 6 months so its pretty soon now that we will get the letter.

They did discuss the mechanical valve but as he will have to be on anti coagulants with that we decided that the human transplant would be the best route.

I am in bits at the moment, I try to stay strong but can't believe my son has to go through all this, it doesn't seem fair, not that it is fair for anyone whatever age etc.

Thank you for your reply, it is much appreciated.

x
 
I don't have any specific info on the homograft, but wanted to say welcome to the site. My 16 yr old is having OHS in 2 1/2 weeks. He has an experimental heart pump right now. They are taking the pump out and rebuilding his aorta and valve on March 12.
I'm with you on sheltering them somewhat. I figure that I am stressing enough for all of us-why should he stress too. The other thing I recommend is to get your son thinking positively about the surgery - how good it will be to get his life back, etc. I have told my son that we will go to the river this summer (he cannot get wet now). Right before the surgery we are going to tell him that he gets the first drive in the off-road car we are building. (believe me, this is a big deal and a big sacrifice for dad & yes it will be at least 8 months after his surgery).
During my son's last OHS my husband and I took shifts sleeping so that someone was always with him during the first few miserable days. I don't think that my son could have survived without his portable DVD player. He watched about 4 seasons of "24" (a TV show here) and numerous movies.
Other than that, prayers are always good if you are so inclined, and take care of yourself - cause none of this will work without you. (that's the lecture I get from my family, so I thought I'd pass it on ;-)) Feel free to PM me if you have any questions.
Good luck and keep us posted.
 
Dianne, thanks so much for taking the time to reply, I am a wreck at the moment, but hold my tears till he is in bed!!

Great advice about the portable DVD, I have got one so will be sure to pack it when the time comes

What I am really srtuggling with is he keeps asking me 'Will I die?" which I answer with "of course not",,,,,,,,but its eating me up inside he is even thinking like this, its not right that a teenager has to go through these emotions, its just not right.

I am a single mum, his father left when I was pregnant so feel very much on my own, not that it has bothered me in the past but right now I would like someone to have with me who felt the love I do for him......does that make sense!?

Anyway, just wanted to say Thank you! I will let you know when we get the date through and thank god for all you lovely people on here.

xxxxxxx
 
Karen,
Just wanted to say welcome. I've always felt, my being the person that received the valve replacement, but also a Mom, that it is much more difficult being a parent of a child having to go through the valve process than being the patient myself. One of our courageous heart Mom's have weighed in. We have a few other very active heart Moms too. LynW has a teenage son who had a tissue valve replacement. Hopefully she'll be along soon.

Please keep us posted on what is going on. Feel free to ask any and all questions. God bless.
 
Thank you Karlynn


I understand totally what you are saying.......I wish i could go through it for him.

Your baby is beautiful!

Thank you

xxxxxxxxxx
 
karen04 said:
Thank you Karlynn


I understand totally what you are saying.......I wish i could go through it for him.

Your baby is beautiful!

Thank you

xxxxxxxxxx
Click to expand...

Thanks Karen! That's my granddaughter! I'm a young granny at 48.
 
I sorry I can't offer any information or advice about the homograft, but I just wanted to say "Welcome" to the community. I'm glad you found us, but sorry for what you're going through. As you've already discovered, there's lots of information, advice, and support here so you're no alone.

All the best to you and your son.
 
Karen, another one who has no advice to offer, but just wants to welcome you to the forum. So glad you found us and I am sure that many heart Moms will chime in here with advice. Your love and concern is obvious and I know that will carry your son a long way in his recovery!
 
I'm in no way an expert on homografts or the pulmonary valve but ive just had AVR and even at my age (37) i was advised to go mechanical as i would have needed a re-op within 8-15 years if i'd gone tissue.

Now maybe the pulmonary is not as 'active' a valve as the aortic and so the homograft will last longer in your son but i'd certainly ask how long they expect it to last.

I'd ask for a visit to the cardiologist/surgeon on your own so you can ask some real questions, sounds like you are trying to shelter your son so much that you are not getting the opportunity to get hold of the information you require from them.

As for pre-surgery help it sounds like you are doing the right thing, letting him see this site and the people on it would be a good thing so he knows hundreds of people are here and alive after their surgery but i guess that would expose him to some of the things you are trying to keep away from him also, guess you'll have to decide whats the best option.

Post surgery just be his gofer (go for this, go for that) and yes, dvd's will be all he fancies probably but no comedies as laughing for a few weeks is not fun. If he suffers from hayfever try to schedule surgery outside this time period as a sneeze is the last thing he will want to do (as is a cough). A wireless laptop with internet access would also fill in the hours. He wont need any special rehab being so young and fit so don't bust his balls about doing it, gentle walks will probably be enough to get him back on track.

I'm on a drug post surgery called coversyl which has reduced my heart size back within acceptable range, ask for that, its not cheap i think but i guess your battle would be getting it on the NHS so if you ask a direct question for the drug they will have to give you a direct reason why you can't have it.

I don't think you need ant-rejection drugs with a homograft as they 'strip' the thing of all the things that cause this so it is person 'neutral' when it goes in (not sure of the correct term) and then his own cells grow into it.

Regards
 
Thank you so much for the reply.

I have had more help tonight off you all than I have had from any Dr (although they are fab I feel they cannot personally answer my questions)

My son knows that I am finding out more from you all and yourfriends and family, I think its important that I tell him and he knows that if or when the time comes that he wants to find out things and chat with people that I have found the website with the best.....so yet again I thank you!

Thank you for all your supports and welcome notes, it has made me feel very humble.

x
 
Hi Karen, Im afraid I dont have specific advice for you, but I wanted to ''welcome'' you to this site, and let you know I have some understanding as to what your going through. My 15 year old son is having some health problems at the moment (heart).He has had several tests done, the last being a stress test on 7th Feb, which was not good, they wouldnt let us leave the hospital until a cardio had spoken to us. He said Thomas needed a ct scan asap. Here we are over 2weeks later and no appointment has come for him. Iv actually been on the phone for the last two days chasing up an appointment for him to have a ct scan done. Turns out ''somebody forgot'' to send the letter to Dublin.(long story)
They told me today Thomas needs a 64 slice ct scan. Its funny I had gotten used to the fact that he needed a ct scan, but when they said today, he needs a 64 slice ct, my mind is now racing with thoughts of ''why''...why wont the regular ct scan do...does this mean theres something ''serious'' going on.

My son also asks me ''whats wrong with me''..''when will I be back to normal'' etc ...its so difficult to give honest answers but without frightening them even more than they are already.

Like you, I am a single Mum, (for almost 11 years) so I know EXACTLY what you mean.

I will be thinking of you all. Best Wishes.
 
Karen my son had pulmonary valve

Karen my son had pulmonary valve

replaced at 27. He was born with the defect Tetralogy of Fallot and part of this defect is that the pulmonary artery is too narrow. He did well over the years and in adulthood found himself tiring and short of breath. He is an avid snow skiier. The surgeron when he was an infant enlarged the pulmonary artey with a patch as large as he could but the valve no longer worked. My son had surgery 3 years ago to replace the pulmonary valve. He wanted a biological valve and a bovine valve was used. The surgeon put in the largest size he could to last the longest in his heart. He was told it would last 10 to 20 years.

He was in the hospital 5 days and healed beautifully. He was back at work in 6 weeks. He was skiing again in 4 months. He lives in Colorado. He hasn't had any problems other than some arrythmia which he has occassionally due to the ventricular septal defect that also occurs with TET.

I would think that your son being so young will do well. The first two weeks will be the hardest and then pain will ease and he will begin to feel better. Hope this helps, Cindy
 
Thank you Jacqui & Cindy for your replies, they mean a lot to me! Cindy, I hope your sons CT scan goes well, I really do, and I will be thinking of you. Please let me know how he gets on, its just so hard being a mum and trying to be strong and brave for then, whatever age they are they are always your baby.....

Jacqui, thanks for your words of encourgement, my son too is a sports fanatic!, that is one of his main concerns...will he still be able to play football after the op, I told him he will probably play even better, he replied that this is not possible as he is already the best!!!! That made me laugh.

Thank you!!!!!!

Karen

xx
 
Hi Karen and welcome to the site; glad you found it! I don't know about the homograft issue but surely someone else will be able to post some specific info.

Reading your posts, though: I was recalling my first heart surgery, which was shortly before I turned 18. I was in the pediatric wards of two different hospitals and I recall finding it difficult (and somewhat embarassing) to have infants as roommates, partly because I was all but an adult. Probably seems like a funny recollection to some but it mattered a lot to me then.

I have two sons and can appreciate the difficulties of seeing your son go through this kind of thing. Please tell him that we're all pulling for him and you.
 
I want to say that yes, I did have meetings with the docs without my son present. Especially at the beginning. I discussed with my son that the docs had to tell me a lot of things that COULD happen, but PROBABLY would NOT happen. I promised to tell my son everything that he needed to know, when he needed to know it. He was and is quite happy with this arrangement. When people ask him if he is nervous or worried about surgery he quips "no, that's my mom's department". He is handling all of this far better than I am, but I guess that was the plan.
 
In 2000 I had the Ross Procedure to replace my aortic valve - they do this by replacing it with my pulmonary valve and then replace the pulmonary valve with a homograft. It was explained to me that the homograft does not require any type of anti-coagulant because of the way that it is "cleaned" and "prepared". Best of luck for your son and yourself!
 
Hi, I'm sorry i missed your post when I stopped by earlier (thanks may and Karlynn) My name is Lyn and My son Justin is 18 and was born w/ a few CHDs, one of which is pulm stenosis. justin had his last surgery when he was about the same age as your son. Actually would have been 16, but after surgery was postponed 3, yep 3 times he was 17. That was his 4th OHS, and part of the surgery was he had his conduit (tube that went from right ventricle to pulm artery) replaced and got a pulm valve. He got a bovine valve. the great majority of people i know that got pulm valves got either bovine, porcine or homograph. and he won't need any special meds w/ tissue valves.
How to help, When Justin had his last surgery he could still remember his heart surgery at 10, so he had a little idea of what to expect. When he got hme, he was much more comfortable sleeping in the recliner to first week or so. In my sig is his page that we do all is updates, if you go in the history to May o5 you can read what happend when and get an idea of how he felt. When he was at the hospital, he always packs his video games, I pod and laptop (and cords to hook up to phone line or computer access). and dvds. I'd find out what video game systems the hospital has and maybe let him get a new game. Also the best thing is a small pillow, about the size of a throw pillow, it helps to hug them when you cough, laugh, sneeze so it doesn't hurt as bad. As for what to tell them, it depends on the person, Justin always wanted to know everything and as long as I can remebe has been in the room w/ us when we talked to the docs and surgeons. Now that he is 18, he had to give permission for the docs to talk to me and his Dad, I'm still trying to get used to that.
I'm a little tired so feel free to ask any questions, also I really recomend the adult w CHD forums, there are alot of members there that have had pulm valve replacements, http://www.achaheart.org/ you have to register to get to the forum, but it is free, Lyn
 
Hi Karen,
Im in the UK too (Portsmouth) and am mum to a little girl who has a CHD. She now has a mitral valve replacement - hence us using this excellent site!

Although I don't have experience myself of your son's condition, it sounds like a lot I have read on a UK heart support site I use a lot. You may have heard of it. Its extremely active, helpful and friendly and I would be surprised if you didnt get many replies from mums in the same situation too within a very short time.
The address is www.heartline.org.uk. Then follow the links to the message boards. Its in the same format as this one.

Love Emma
xxx
 
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