From holidays to hellish days to healthy days are here again!

Alpha-1 at the Spanisk Stairs, Rome October 2012

 With Alpha-1 (Alfaener) and Alpha-2 (Alfa-toer)*  to Italy!  (*alpha-2 is my nickname as spouse of an Alpha-1)

Finally it was time for the long planned Italy vacation. Alpha-2 left first to start her own journey in Bologna and Monterenzio, before Couchsurfing in Borgo san Lorenzo and then train to Rome to hopefully find her Alpha-Two at Termini station.

We had looked forward to this for so long, and was not especially worried even if Alpha-1’s home spirometry was not too impressive when he arrived in Rome after a hectic week at work. We stayed in privat accomodation via www.airbnb.com, and enjoyed being well off the turist trail.

Instead we had another Alpha-1, Mario,  within walking distance, and used the opportunity to meet a «relative».  And a couchsurfer, Laura, also within walking distance. So the first two days we just walked around in the neighbourhood, which was like a small town in itself.

But you do not go to Rome to avoid all the sights, so the third afternoon we braved it and took a bus downtown to Piazza Barbarini. From there we did the tourist walk, included taking a horse carriage from The Spanish Stairs to Fontana di Trevi. So many tourists, and this was not even the tourist season! The next day I took my camera and went on my own camerabusiness downtown, while my Alpha-1 chose to rest in the neighbourhood. We spent a nice evening together at a local restaurant and was quite happy even if Alpha-1’s breathing did not improve and his stomach did not enjoy life as much as its owner.

Colosseum, Rome, october 2012

Our last day in Rome we left for Forum Romanum and Colosseum. It was a beautiful warm summerday, 28C, the kind of summerday a frozen pair of Norwegians had dreamt about all the rainy sommer. I bought us each a bottle of water for our walk, but soon noticed that my Alpha-1 had not even touched it. So as usual a wife starts nagging, but Alpha-1’s are not easily housetrained, so no surpise, it did not help.

It was a tired Alpha-2 who finally went to bed that night. FEV1 was even further down than before, so I started to get worried as wives normally do, but he just brushed it off. The puls-oximeter was leftbehind in Norway, and this troubled me a bit. But shit, stop worrying I told myself. You are on holiday!

Hellish days about to begin

The next day we took off to Termini again to go to the airport and pick up our rental car for our next two weeks in our favorite Italian village Pitigliano in southern Tuscany. It was our third time here, so we had friends waiting for us and our spirits were high. We stopped at a restaurant by the sea on our way and had fish and seafood for lunch.

And then we were there – at at our tufo village with its fabulous skyline looming above the road. We had rented a house in the middle of the historical center, but I was not prepared for all the steps that came included in the deal. The house itself had plenty of stairs, and also you had to go down about twenty steep stairs from the street to the house itself. A nagging feeling came over me, what if my Alpha-1 would be sick while we were here? From his past pneumonia I knew how week he could become in just a couple of hours. But I shook the feeling off, and we started to enjoy being back in «our» town.

I had long wanted to invite our friends on my Norwegian specialty Bacalao de la Vega – and so during Sunday all invitations were out. Then came Monday, and my Alpha-1’s stomach started to really make trouble. He became weak as a newborn kitten, and I got really worried. What was this??? In the evening I went to find my friend Elisabetta, who was willing to drive him to Pronto Soccorso – the emergency room at the local hosital. The town has only around 4000 inhabitants, so we did not know what to expect. But by the help of our friend we got his SO2 checked, and also hil pulse. All normal. A stomach virus from seafood or icecream was the plausible verdict, and so we went home with a prescription of Potassium/Magnesium and also some probiotica.

The next day Geir tried to drink more water, and felt a bit better. But as the guests started to arrive for the bacalao-party he had to give in and go to bed. All he drank came straight out again, and the breathing was not good. So we decided that if he was not better the next day, we had to go back to the hospital again.

Hellish days continues

The next night was among the more unpleasant we have had.  Alpha-1 was at the bathroom every hour – at least if felt like that for me – trying to sleep in the midst of my worries about what was going on. I had been out with my Iphone googling dehydration, which started to creep up in my mind as a possible cause for all this. At a certain point in dehydration there is not enough electrolytes for the cells to operate properly. The result is they can no longer take up water, so it does not help how much you drink  – it all comes out again. This can be dangerous and I felt a desperate need to get him back to the hospital.

Thanks to my friend who again found the time to go with me to the Pronto Soccorso, and my Iphone with ITranslate i was able to explain about Alpha-1’s situation, and how worried I was. Wonder over all wonders, it was the same doctor, who already at our first visit had made it lear that he knew about alpha-1 antitrypsin deficiency. This time there was no hesitation. The ambulance was ordered to go and pick him up in the histrical center. They knew the adress, so I could just go home and get my husband ready. We had our European Health Card with us, so at the moment he was like any other Italian sick person.  Travel insurance was not important at the hospital.

«Standard Procedure for Alpha-1»

So home I ran, and had hardly gotten him ready to leave before they rang the bell. But he still had to walk all the stairs up to the first road, which is to narrow for the ambulance. Then yet another flight of stairs to the piazza. He does not remember a thing from this walk, but he made it as the strongwilled alpha-1 he is! Finally at the hospital he was given IV salt-solution while they got ready for bloodtest and the rest. Again, SO2, pulse and this time also ECG. Then came the first positive shock when the doctor says: «We must remember that alpha- 1 is a liver disease. » Two years with the diagnose in Norway and not even one lung specialist had said anything about the liver. We knew because we had learned a lot on our own and through our Facebook-groups, and had tried to get ultrasound for half a year. The first apointment at home were cancelled due to little capasity – and they made it clear that this was not something they normally did.

But in this little town in poor Italy – next step was Xray – not only lungs standing, but also laying down. Then the biggest surprise – ultrasound! I was asked to join and could se the ultrasound man taking a lot of pictures of all soft organs.  I crossed my fingers nothing was wrong, we had had no indications so far…  And nothing was wrong! What a relief! No bacterial infection since the white blood cells was also normal, but very week from dehydration. So while there he got more IV salt water and glucose to gain some strenght. Later the same day he was reliesed, and we got the paperwork with us home. (Forgot to mention that by chance I had also his papers from Norway with me, so the doctor could compare results)

Moving to «piano terra»

I knew some of our friends had a two-room apartment just in from a side street, and after seeing how hopeless we lived if anything happened decided to ask them if we could rent it for the rest of our vacation. I did not want to spend one more night in the house, no matter how beautiful it was and no matter what a fantastic view we had.

They said yes at once, and Marcello would come down and help Geir up the stairs later that day. I packed and moved everything from the house to the apartment, so these days I did not need a healt studio for exercice!

Finally installed in our new quarters I felt relieved. From here it could only go forward , we both thought. But Alpha-1 and Alpha -2 were not allowed a long stay in Paradise.

Hellish days continues!

Geir understood by now the importance of drinking enough water. But the days with diarrhea had taken its toll, and to start eating again became a problem. What to eat? From a year in Houston Texas a long time ago I had learned that chicken soup is the solution to every health issue, so I went out shopping what I needed.  In addition I had oat flakes, and oatsoup is a well known remedy in Norway.  So let us combine them!

And small espresso cups by small espresso cups the food went down – and stayed down!

But then a new nasty surprise: coughing! My alpha-1 has never been troubled with that, so the nerve-racking coughing spells that now started, especially at night was another new and unwelcome guest.  We were both tired after many nights with little sleep, and this scared us!

Alpha-help is near!

During all these ordeals I had been in contact with our alpha-1 friend in Rome. And now, almost desperat, I sent him a new text message, explaining the problem and asking if there was anything more we could do. And then the relief when he answered that we could send the papers from the hospital to him. Then he would contact his specialists in Rome and call back.

Next step – the public library and my librarian friend. I knew she had a scanner there, and could help me with this. And Elisabetta was again a true friend, putting everything aside for me.

Then, finally, the answer from Mario who had heard from one of his doctors: Due to the dehydration my Alpha-1 had gone through, the lungs were very dehydrated. Now hydration had started again, and the irritation came with it. Nothing dangerous, nothing bacterial, nothing to worry about, just damned unpleasant. But we could go to the pharmacy the next morning and buy some stuff and get an aerosol nebulizer. That should do the trick.

Alpha-1 with a new friend

Healthy days are here again!

Off I went, and the sweet girl at the pharmacy had everything I needed, included a nebulizer we could rent for 1 euro a day – or buy for 70 euros. We decided to rent, a decision we regretted later. More on that in the next post.  And now finally – at the very last days – things started slowly to improve. But my Alpha-1 was still to weak to travel anywhere, so we decided we had to stay on some more days to help him recover a bit more before going back to Rome and fly home. Rearranging our trip went without problems – and now even the weather started to improve from bucket fulls of water to nice warm sunshine. We went our daily walk to the piazza for our coffee… and even further as his condition improved – the sun was shining and life was finally back on track again.

Life was good again in Pitigliano, and we had learned another new alpha-1-lesson: Always drink enough water! Dehydration really affects the lungs! And also on hot days, get enough salt!

WARNING: NORMAL REFINED TABLESALT IS DEPRIVED OF ELECTROLYTES THE CELLS NEED! USE ONLY UNREFINED SEA SALT OR HIMALAYASALT WHICH CONTAINS ALL MINERALS AND TRACE MINERALS.

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