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annagib 
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Joined: 27 May 2012 Location: Hampshire Points: 12 |
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 Topic: Hi Im newPosted: 01 Jun 2012 at 5:05pm |
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Good evening all
Im a new member so thought Id introduce myself, Im Anna, Im fron Hampshire UK and I hope you dont mind me joining at the moment because I havent actually been diagnosed with this condition as yet. My story is a fairly long one so I wont bore you with the detail but I have some old blood clots in lungs which were missed in 2007 and then picked up in 2010 which cause me breathlessness whenever I try and do anything much. I go to the Brompton and have been referred to Papworth with a view to them assessing me for an op to remove the clots. I was told by Brompton I didnt have PH but Papworth dont totally agree so have had another round of all the usual tests there and am going to Papworth next week for RH cathether test/MRI/exercise test as they think I may have PH which happens when I exercise. Can anyone help re the rh cathether, Im scared, sounds horrible, what is it really like? Im going in on Tuesday and coming out on Friday after meeting with the Drs for their verdict. Looking forward to talking to you all Anna
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Rita
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Joined: 21 Oct 2010 Location: Brecon Wales Points: 397 |
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Posted: 01 Jun 2012 at 5:54pm |
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Hi Anna and welcome to the site. I had a similar experience to you I had
old clots which were formed in 1998 and nothing was done about them until 2003. I was then referred to Hammersmith hospital. they did various tests including the RHC which I didn't find find particularly scary or painful and I have had a few more since then, and whilst you have to lie still for awhile I found it interesting to see the screen, they ususally go in through the groin but I have also had them go through The chest, You probably feel a bit of pushing to the groin area to start but once the catheter is in you'll be fine. After the procedure they have to press very firmly where they went in to suppress any bleeding and lie flat for a few hours. I was referred to Papworth also from Hammersmith and they are brilliant I have found the staff there very nice, so please don't worry you'll be in safe hands. Please let us know how you get on. Good Luck to you Rita xxx
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To receive a smile give one away
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Carole
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Joined: 26 Aug 2011 Location: Halifax Points: 459 |
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Posted: 01 Jun 2012 at 7:26pm |
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Hi Anna,
So pleased you have decided to join the forum, you will get so much out of it. If you have read some of these forums you may have read that to me a rhc is a doddle. I have said I have so many they are talking about giving me a loyalty card so do not fear them. Mine have always been given through my right side of the neck and apart from a bit of pushing while they get the line in you will not feel much, maybe a small palpitation as it nears your heart but no pain. The consultant talks and laughs through the whole procedure, as can you, until a certain time when he will say right Carole shut up now we need you not to talk for this wedge. Wedge is a reading and talking can change it. Then as described in post above they do have to,push down on the entry hole quite hard but this is only pressure, not pain. You are not to get out of bed for an hour after procedure but then all is fine. No stitches but a big white dressing. You may bruise rather badly as a result of the procedure and sometimes my neck has been stiff but I now know not to,hold it carefully but to use it and turn my head from side to,side, this stops it stiffening. If you sort of fear to,use the neck so to speak this is when it stiffens so do not do that. I hope all goes well but any fears or worries you have please post here. This is what the forum is for. I have got invaluable help given by people on this site and thank god for it . One thing I have learnt is that we need each other Let us know how you get on. By the way if you need an MRI this was the one that scared me most, need not have done as I now know but at the time it did. Since then had three.moreso not worried now but at hallamshire they will let your partner sit next to you if he or she complies to certain things. You can not hear then talk much due to clunking of machine but can be reassuring for you to know that they are at your side. Take care and keep in touch Carole Ro Le |
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CA
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Karen
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Joined: 21 Oct 2010 Location: Essex Points: 558 |
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Posted: 01 Jun 2012 at 8:30pm |
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Hello and welcome to the site.
I agree with what rita says, you feel a bit of pushing and a little uncomfortable when they put the injection in but apart from that the procedure is not at all painful. I watched mine on the screen and found it very interesting. I wish you all the best, take care . xx Btw i have had PH for 24 years now.
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Ken\'s Barbie
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Joined: 30 Apr 2012 Location: West Lancs Points: 178 |
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Posted: 01 Jun 2012 at 8:56pm |
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Hi Anna and welcome
We have all been there and all be scared witless, but like the others I can guarantee that there is nothing to worry about at all with an RHC. Just don't talk too much or you'll get told off lol love Barb
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Good humoured positivity is far better than grumpy negativity
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jim31237
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Joined: 04 Apr 2012 Location: fife.scotland Points: 48 |
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Posted: 02 Jun 2012 at 1:56pm |
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hi anna like you we are relativly new to the site but find it a real positive source of info and all the ph people onsight are very friendly and there for you when needed like you my partner bernadette was sent to our specialist centre which here in scotland is golden jubilee hospital were bernadette was diagnosed with the ipah using the tests you have mentioned the rhc was done through bernadettes neck which was painless +all other test were painfree like you she went in on the tuesday and was diagnosed on the friday with the idiopathic pulmonary arterial hypertension. the idiopathic meaning theres no known cause to why she suffers the ipah. so we would like to send you and your family best wishes and a very warm welcome to the ph uk website. jim+bernadette.
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jim partner of bernadette who suffers from idiopathic pulmonary arterial hypertension and diabetes.
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Peto
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Joined: 08 Apr 2012 Location: Cardiff Points: 52 |
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Posted: 02 Jun 2012 at 1:57pm |
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Hello Anna and welcome. Papworth is a lovely hospital and they will look after you there. As the others have said the RHC sounds very scary but its OK and over quite soon.
Let us know how you get on.
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margwxs
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Joined: 21 Oct 2010 Location: Cornwall UK Points: 237 |
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Posted: 02 Jun 2012 at 3:12pm |
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Hi Anna
Welcome to the group, though sorry that you have had to come to us. However you will find it invaluable, as everyone has experience of different hospitals. I was diagnosed purely by chance 2 years ago, when I "misbehaved" at the end of a minor op and spent 5 days in intensive care with them not knowing why my oxygen levels were so low. I was then transferred to respiratory unit, and within 4 days was given the news that it was PH. Only told it was caused by lungs full of old clots, and I would be on Warfarin for life. Told I could go home once oxygen was installed, but as I wasn't on it in respiratory unit, though it was for emergency use only!! Only when I found this site, did I go on a steep learning curve!! Realised I wasn't going to get best care locally, so asked GP to refer me to Papworth, as didn't fancy having to drive through London with large caravan on the back. The staff at Papworth are lovely and explain everything in detail. As the others have said, the RHC is nothing to worry about - I have mine in my neck and all you feel is a pushing. I am back in Papworth next month and am hoping they can improve me, as I caught a bug in February in Spain, and my pressure is higher than before I started treatment, though this has to be confirmed by Papworth Drs, after a recent scan done in Plymouth. My breathlessness is much worse too, so fingers crossed that they come up with either increased dosage or different treatment. Take Care, and try not to worry. Margaret |
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Music makes the world go round
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jet
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Joined: 21 Oct 2010 Location: Reading Points: 349 |
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Posted: 02 Jun 2012 at 4:05pm |
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Hi and a big welcome Anna x
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Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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annagib
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Joined: 27 May 2012 Location: Hampshire Points: 12 |
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Posted: 02 Jun 2012 at 10:18pm |
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Hi all, thanks so much for your warm welcome.
I will indeed let you know how I get on next week, thank you for your reassurances re the rhc, I am having it done in my neck also as some of you have done before. Today sees the start of preparation - nurse has been tonight and done a Clexane jab as coming off the Warfarin and having another Sunday and Monday. Also received info this morning about some additional tests Drs @ Papworth would like to do during the rhc as part of a research study they are doing so got to read up on that also. I wish you all a good weekend and bank holidays Anna xx
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staciep90
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Joined: 22 Apr 2011 Location: Swindon Points: 171 |
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Posted: 04 Jun 2012 at 11:08pm |
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Hi,
Sorry I'm a little late in welcoming you, so Welcome! I can't really help with the RHC because I'm a tad unique in the sense that every one of mine has been done under general anesthetic as I had one (sometimes two) done every year til I was 13 and being under 18 meant I had to have it done under general. But my experience with it was okay, sometimes not but that was because I have bad reactions to anesthetic so I'm probably not the best person to ask. But most people I talk to have had good experiences with them and I'm sure everything will go great for you. I find all the other test fine but thats probablly because I've been doing them since I an remember key is just to relax :-). Let us know how you get on Stacie xoxo |
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Life is worth the fight :o)
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AngelAli
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Joined: 17 Dec 2011 Location: Ely Points: 55 |
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Posted: 08 Jun 2012 at 10:51am |
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Hi,
Sorry for being a little late in responding. Welcome to the group and sorry that you find a need to be here (if you understand what I mean!). I suspect I am too late to offer any comfort to you, but I am in a very similar position to yourself, although booked to have CPET (Cardio-pulmonary exercise test)/Filter/Angiogram and so on from 20th June in Papworth. I had RHC there in February, along with MRI etc and the MRI was far worse than the RHC. My story is one of multiple misdiagnosed DVT and PE over several years. At rest, a lot of the time I can cope without any problems, but even standing up can be enough to leave me gasping for breath. This is my second CPET and it apparently reveals how PH is affecting mobility. TO give an example of the impact of this, in December 2010, I was doing an hours resistance exercise on a cross-trainer every day. When the last PE struck, I started to pass out at under 7 minutes. Today, despite exercising gently every day, I cannot get past 2 1/2 minutes on the cross-trainer - even with all resistance removed. I am on the waiting list for PTE surgery and am fortunate that apparently my blockages are in the more easily accessible areas. For the particular problem we have, at least there is often a solution - I really feel for those who do not have such a solution.
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annagib
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Joined: 27 May 2012 Location: Hampshire Points: 12 |
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Posted: 12 Jun 2012 at 4:33pm |
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Hi all thanks for your replies and help. JUst to let you all know I got on OK at Papworth, the RHC I found alright once the access was in, just a bit of fluttering, the dressing they put on afterwards was almost worse because it was so tight!
I had the MRI too, the person that needs to look at this was off this week so will be only looking at it this week. Unfortunately I couldnt have the CPET as the bike was broken! I was told it wont be fixed for two weeks so hopefully its sorted for your test AngelAli. So the outcome was that I have to go back for the CPET either to Papworth or Brompton if they do it there, just waiting to here back when can go for this. I am very relieved as Drs were able to advise that although I have elevated pressure in the artery its not high enough to class me as having PH, they said its 22 and higher than a normal reading but 25 or over is classed as PH so I think it will be a case of monitoring for the moment, until such time as it gets worse. |
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Peto
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Joined: 08 Apr 2012 Location: Cardiff Points: 52 |
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Posted: 13 Jun 2012 at 1:54pm |
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Glad to hear your appt went OK and the results were good, lets hope they stay that way!
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Carole
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Joined: 26 Aug 2011 Location: Halifax Points: 459 |
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Posted: 13 Jun 2012 at 6:07pm |
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Hi, yes I too am happy at the result for you long may it last. Good luck with the rest of the tests.
Carole
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CA
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annagib
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Joined: 27 May 2012 Location: Hampshire Points: 12 |
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Posted: 13 Jun 2012 at 10:40pm |
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thank you all
will update as and when xx
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Ken\'s Barbie
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Joined: 30 Apr 2012 Location: West Lancs Points: 178 |
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Posted: 14 Jun 2012 at 3:05pm |
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Good news then Anna. Hope that you stay well bu if they are monitoring you they will pick problems up quickly
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Good humoured positivity is far better than grumpy negativity
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