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Pulmonary Hypertension - scared...

(21 Posts)
nancerama Thu 31-May-12 09:55:30

So, yesterday DH was told that he has suspected pulmonary hypertension. He has 4 more hospital appointments over the next month where they will run tests to fully diagnose and decide upon a course of treatment, so by this time next month we should know what we're up against.

I don't think I've ever been so terrified in my life. I know I shouldn't Google, but I feel I need to know what we're potentially dealing with. It seems that even the best case scenario doesn't look great. I'm scared for DH that he may have to undergo some horrible treatments, I'm scared for DS that his daddy may not be able to do the things other daddys do, and I'm scared that so much could change for us. It seems so unfair.

We've not talked about it, but I know at some point we will have to acknowledge that there are some big changes for us around the corner. I don't think DH really wants to admit there is anything wrong with him until he has something definitive in black and white.

Im not sure what I hope to achieve by posting. I guess I need to offload. I don't really want to share with anyone in RL yet until DH is ready to talk openly.

nancerama Mon 09-Jul-12 09:31:53

DH has his first appointment with the PH specialist in London this morning. I can't go with him as I have to take care of DS and hauling him onto public transport in the rush hour wouldn't be helpful to anyone.

I feel terrible that DH has to do all this on his own. I am so anxious for him sad

Thinking of you x

suzikettles Mon 09-Jul-12 09:34:42

I'm sorry that you're having such a worrying time.

I don't know anything about this condition, but I hope the tests go well and you get better news than you're expecting. Sometimes bizarrely just knowing for sure what you're facing can be easier than the unknown.

noddyholder Mon 09-Jul-12 09:34:55

I have a heart condition which has weakened the left side I think PH relates to the right. The treatments for this have really moved on in the last 10 years so I would stay focussed on what the doctors tll you today. What are his symptoms now

nancerama Mon 09-Jul-12 09:48:24

Thank you for your kindness. It means a lot.

We are hoping it's been caught early. DH had a cough and chest infection in April which wouldn't shift. It turned into pneumonia and he was sent for a chest X-ray. They spotted the PH symptoms on the chest X-ray and sent him for the tests. He has an enlarged right side of the heart

Waiting for the NHS cogs to turn and get him into the system feels like it has taken an age and I'm sure it will be a relief today to know what's going on and to know how we're going to tackle it.

DH is only in his early 30's. We used to have such an active life. He struggles now to walk more than 10 minutes down the road and can't manage even a slight slope, never mind a hill. To see him deteriorate so fast has been such a shock.

He's such an amazing husband and father. He never complains about how he's feeling. Whatever happens, I'm so lucky to have him.

noddyholder Mon 09-Jul-12 09:51:21

You sound lovely and like you will be a great support as he comes to terms with this. I have enlarged left side and am on tablets to reduce teh work it has to do Over time these tablets can help stabilise and even improve the function. Good luck today and keep us posted x

noddyholder Mon 09-Jul-12 09:51:41

Which hospital are you going to?

nancerama Mon 09-Jul-12 09:57:45

He's going to the Hammersmith hospital. Just an outpatient today, although they made him pack a bag in case they want to keep him in. I hope they don't keep him in. The stubborn toad refused to pack pajamas as he doesn't like them...

nancerama Mon 09-Jul-12 12:52:21

Just heard from DH. They are repeating all the tests that he had at our local hospital today. He won't need to stay overnight.

He has been asked to go back on Sunday and they'll be keeping him in for a week. I don't think I'll be able to visit every day - we're an hour away at least and dragging a 1 year old there and back won't be much fun (and horrifically expensive).

Does anyone have any suggestions for nice things I can put in his hospital bag for him? He has iThings, so entertainment will be sorted.

suzikettles Mon 09-Jul-12 20:42:39

I'm sorry it's going to take a while for them to find out what's going on.

Not sure what to suggest for his bag (it's harder with blokes!). Maybe a little note for him to find? A fingerpainting by ds? Favourite snacks, his own pillow maybe? Comfies for schlepping about the ward - I guess he'll not actually be in bed for most of the time?

Does he have an ipad that he could maybe use to Skype you so he can still say goodnight to ds or things like that?

nancerama Tue 10-Jul-12 17:07:17

Pillows! That's a great idea - thank you. My feather pillows made 4 nights on a maternity ward almost bearable. You've prompted me to seek out my hospital bag list from having DS and make amends to that. He has an iPad, so we can FaceTime every day.

I've stocked up on his favourite biscuits and chocolate bars and have added a few packets of bear

As he's acting like a child and still throwing a paddy about PJs, I've treated him to some Dangermouse nightwear too.

iloverhubarb Sun 15-Jul-12 17:14:10

Hello nancerama
How is he doing and how are you?

I'm seen at Hammersmith, was in there Jan for tests and then Feb for an op last year. Pillows is great advice. Also comfortable mattress protector or blanket to put between sheet and plastic hospital mattress cover which makes you sweat all night long! Did he like the pyjamas?

I have a heart problem like noddyholder - L side enlargement rather than right, my symptoms very similar though, poor your DH, it's frightening. Best of luck

nancerama Sun 15-Jul-12 18:12:37

I'm just back from dropping DH at the hospital. It turned into a bit of a flying visit as we were told off for bringing DS with us as children are infection risks. I wish they'd told us that before I'd made the 90 minute journey down the M4! After a very hurried goodbye, the poor kid was very angry about being shoved back into his car seat and bellowed all the way home.

DH is in good spirits, but surrounded by very elderly patients who are not in a good way at all. He's bored already! Although obviously he'd rather not be there, I think he's looking forward to getting some kind of final diagnosis and a course of treatment in place. I'm just looking forward to having him home.

ilovesprouts Sun 15-Jul-12 18:17:26

.

nancerama Mon 16-Jul-12 07:21:35

Poor DH is grumpy. I'm not quite sure what he was expecting from his hospital stay, but he's not had a great night. He was woken 4 times in the night for various tests and they've taken away all his iThings because they don't want to risk expensive things going missing on the ward. He didn't think to pack a back up book or magazine.

nancerama Wed 18-Jul-12 18:22:34

Everything crossed, DH is being discharged tonight. He's been poked, prodded, probed, scanned and exercised to near exhaustion. Now he has his diagnosis and has been put on his medication. He's exhausted and feeling a bit battered and bruised, but seems in better spirits now he knows he's coming home.

The last few months have been really stressful, and I'm sure we'll have some ups and downs while he adjusts to his medication and the changes his condition might bring.

I am so very grateful to his GP for spotting that something wasn't right when neither me or DH had a clue, to the consultants at our local hospital for referring him on so quickly and for the Hammersmith hospital for taking such good care of him. I've never been so thankful for the NHS and for the people out there who pay their taxes so that people like DH get the medication they need to stay alive. I dread to think what situation we might be in right now if we lived anywhere else in the world.

suzikettles Wed 18-Jul-12 22:51:32

I'm glad he's getting home with you nancerama. Fingers crossed that the medication keeps him well.

nancerama Fri 14-Sep-12 18:37:14

I owe you lovely supportive ladies an update. It's been a few months since DH's diagnosis, and things are going really well for us. DH is getting fitter every day - perhaps due to his medication, and perhaps due to him recovering fully from the pneumonia. Either way, we are able to do so much more as a family.

His employers have been outstanding, allowing him to work flexible hours and some days from home while he regains his strength and gets used to the medication. By the end of the month he expects to be almost full time again.

The future remains a bit of an unknown - it's very rare for PH to be diagnosed this early and he's one of only 2 patients being treated at this early stage, but for now everything is controllable with medication. Stuff is much less scary. I have a DH and DS has a daddy who can do dad stuff.

Thank you for the hand holding - I hope those of you undergoing similar treatments and investigations are all doing well too.

Heebiejeebie Wed 10-Oct-12 21:41:50

I don't have anything useful to say but I wanted to say thank you for updating and I'm really pleased your husband is feeling a bit better. Being diagnosed early in an illness is good news, in that it means you get treatment which may prevent later complications, but is also bloody hard to deal with when you feel fine and wish you didn't know about all the possible complications. All the best to you and your family.

nancerama Mon 15-Oct-12 22:02:32

DH had a check up at the hospital today and he's feeling very down now. He has to go back every few months for routine tests to make sure the drugs are doing their job.

While he's feeling better than he has in years, the tests don't show a huge improvement in his pressures, despite all the drugs he's taking.

The doctors have told him that he will most likely have a pump fitted to his heart in the future, and it's expected that he will land up on the transplant register at some time.

Poor DH is really struggling to get his head around all this. Of course, no one knows how far in the future these things might happen, but it's a scary prospect for him, and having even a small insight into your future is a very heavy thing for anyone to deal with. He doesn't really understand how he can feel so well, but so much bad stuff can be going on under the surface.

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