Here we can all be heard for a little while. Part 3

katsu

That would save you £100 a trip WaS

Seriously, you will make it through this. You are doing it to be with WaSp and have the safety of the taxi to get you from door to door. Maybe take a blanket if you want the feeling you have one to shelter in if you need it?

dandy-candy

Good luck WaS. I'm wondering how much it would be to stay at a B&B nearby. Might be cheaper that a taxi each time?

jobbingmusician

Almost bound to be, I would think. I think that's an excellent idea, WaS, if it's not too stressful for you. A B & B would ensure you have one good meal a day, too - they might bring it to your room if you explained your difficulties a bit (even if you just said your partner is v ill and you don't want to eat in public because you keep crying )

calleyw

WaS,



thats really hard you are so far away. Where I live we have a link scheme that is run by volunteers for exact the reason you need them. And a donation is all that is required towards the cost of the fuel. So worth a look to see if any thing local. Even if you used them one way and got a taxi back. Would help save money and for you to get see WaSP more often.



I have pm'd you as well.


Take care.


Yours


Calley x

Waves_and_Smiles

I made it! Thanks to the best taxi company I have ever encountered. The driver going to Cardiff was so nice so I explained I am agoraphobic and this is the furthest I have travelled alone in over 20 years. He was the one picking me up too so at the end of visiting time he parked the car and came up to the ward and walked me back down! He was so, so kind, his wife has mental health problems so he was very supportive.

WaSp looks terrible! He is now on 24 hour oxygen because the blood vessels to his lungs are swollen and his stats drop without help. He is now taking 2 high dose steroids a day so they are monitoring all of his vital organs and waiting for the inflammation to go down. As well as oxygen he is having blood transfusions and dialysis to try to support his body while we wait. The staff are excellent and he is in a tiny ward with only 2 other people so there is a lot of one to one attention. Once the steroids do their job we will know if his organs have suffered any permanent damage.

I am hoping to go back with the same lovely taxi driver next Thursday.

pollyanna_26

Well done WaS for getting to the hospital . I hope once WaSp is stable there will be a point where he can be treated nearer to home.
Your lovely taxi driver sounds like the one who drove myself and dd to appts both in our trust and beyond . He's local to our area but after a while taking us locally he picked up on dds panic, extreme anxiety and people phobia and offered to book future trips whether local or out of area whenever we needed . As he could set his own working hours he did it off the books and charged us much less than metered costs .
He retired last year but someone from the same firm has taken his place.


I know yours doesn't live locally but as he was willing to to travel to pick you up and come out for the return journey he may be willing to be your driver when needed . We found dealing direct with our driver meant dds stress and anxiety levels were lowered . The fact things would be arranged in advance for each round trip stopped her worrying whether a taxi would be late or wouldn't turn up . We always planned for getting to appts early enough for a bit of time for her to have some headspace and prepare herself to "people"
We grew very fond of the driver who became a friend and after a while she was having lively chats and sharing jokes during the journey, that would have been impossible beforehand.


Make sure you eat and rest when able .
pollyx

Waves_and_Smiles

Funny you should say that Pollyanna, I have just booked taxi's in advance for next Thursday with the same driver. The fact he came up to the ward and collected me made such a difference. I am trying to look after myself, I had a shopping delivery today because I have been living off toast since Tuesday. At least I can have healthy salads now.

WaSp is now being giving daily blood plasma exchanges. This takes the plasma from his blood, cleans the inflamed part and puts the now healthy blood back in. This should help to reduce the inflammation in the blood vessels quickly. Fortunately the hospital staff are so kind and answer all of my questions, I have a lot! Three days ago I had never heard of Vasculitis, now I am working on becoming an expert in it.

jobbingmusician

WaS you are great - your fabulous positive mental attitude will achieve a lot xxx

Waves_and_Smiles

I am trying to be positive JM although WaSp could only talk to me for 2 minutes earlier before he couldn't breathe. The nurse took the phone and connected him back on oxygen. That worried me. I had a chat with her and she said it is serious but they are doing all they can to reduce the inflammation as quickly as possible and once the blood vessels in his lungs aren't swollen he will be able to hold more oxygen. They are using 4 daily treatments to support his organs, we just need the steroids to lower his immune response to stop his blood vessels from being so inflamed. I won't say this isn't scary to me, but they are certainly doing all they can right now.

jobbingmusician

Yes, it is scary, but Mr JM has explained to me that the steroids will take a while before they kick in. (Don't ask how he manages to be an expert on vasculitis while I am reading him your posts. He's just always right!) x