Tuesday, April 27, 2010

Baby Talk, and my Diagnosis

So, tonight, I feel like sharing to the 2 people that read my blog:)

My friend, C, invited me out tonight w/ some of her church friends to a "Ladies Night Out" Dinner. I wasn't sure about going, but decided that it may be good for me. So, I went. The food was a bit expensive, but very good. C made sure that she introduced me to everyone else, and she and I chatted, and most of the night, i didn't feel ignored. But as I thought, eventually, the talk turned to kids, pregnancy, etc. I knew it would, as most of her (and me too) friends have children. It was hard, actually thought about leaving, but I decided to stay. I know I should be grateful just to be alive, etc, but I really am starting to feel the "gnawing", as I am getting older, etc. Most of my friends have children, and a lot of people have been having babies recently. Although I am very happy for them, I am still sad that we probably won't have any. To be fair, we haven't been considered "infertile". I have PCOS, and that can be easily rectified through drugs (maybe), but even then, we aren't sure. Then there is my "new" health problems to worry about. I don't know if I can carry a pregnancy to term or not. This will need to be discussed w/ the Specialist that my GP is referring me to. Anyway..just felt like sharing that with you:)

So, nothing really new lately. Just been trying to not do too much, but somehow, I end up going out and doing errands, but I love it. The weather sure has been warm lately. Anker and I spent some time at the park on Sunday...it wasn't that warm, and very windy, but at least we got out.

I walked up hill (2x) and I did great...I didn't get out of breath (until the very end), which has been something that I haven't been able to do (well) in about 2 years.

Two weeks ago, Anker and I went to my parents church and place for the day. It was a lovely day, and we pretty much just sat outside all afternoon, and afterwards, we had a great Turkey supper!!

I am enjoying this lovely shake that I make every few days (I should be making it every day..but I don't..lol). Mom told me about it..and it is sooo good...I put in 1Tb of OJ (frozen), and 1TB of milk powder, half a glass/cup of water, ANY berries, frozen or fresh, 1 egg, banana (optional), and ice...oh, and artificial sweetner (again..optional..but I like it with it in). It makes about 2 1/2 glasses...soo good!! Today, I forgot the egg..oh well:)

I made some WICKED chicken wings yesterday...sooo good! I totally just made up the recipe, too. Honey (liquid), mustard, ketchup, and Italian dressing..mmm:) 350 for about an hour..YUMMY!!

SOOO..some of you are wondering what exactly happened to me when I got sick...

It's really a looong story...BUT I will try to shorten it...

I think it all started in Oct 2008...I started feeling out of breath, etc, but not sure what was up..I would have problems sleeping, and not be able to sleep laying flat, and I would cough if I got real bad. In May 2009, I had a gastroscopy, a she told me that I had hiatus hernia, where some of the upper stomach protrude through the esophagus. I totally wasn't sure if I had it though, as I wasn't having some of the symptoms that usually go along with it. Anyway...I would have a week or so of having it really bad, to being ok for a few weeks. I was also having headaches when I woke up in the morning, but I went to my GP, who did a thorough check up, and said it wasn't anything to be concerned about. I tried not having caffeine at night, to not being on the computer so late, etc.

So..fast forward to Feb of this year. I went to help my cousin and her family, and she noticed a couple of times that my lips and face were blue. I then noticed later in the week that my fingers were blue. So...the weekend before I came home, I spent it w/ my grandparents..I wasn't walking normally (a normal speed), and I just felt SOOO tired. I finally went to see my GP, and he told me to get some tests done, etc...but didn't seem overly concerned. I then woke up the next day w/ my right hand not being able to move. I went to the hospital, as it was Friday, and my Doctor isn't open that day. The ER doc totally dismissed me, and just told me (w/o doing ANY testing), that I had Raynauds Disease.

So, two days ago, on Sunday, I wanted to go to my parents house, as it was my sisters 18th b day, and I wanted to be there to help her celebrate it. Anker drove me on Sunday afternoon (oh, and I must say, that before this I was feeling awful..I just felt like I had the flu..and NO energy to do ANYTHING!!), to the ranch, and promptly cam e home, as he had to work that afternoon. Mom took one look at me, and told me that if I looked like that on Monday, then she would take me to the DR. So, the next day, she took me in, and he took one look at me, and asked about 3 questions, and then told me (after listening to my heart/lungs), that I had fluid on the lungs, and heart failure. He told us to go the hospital, and to get some tests, done, and wait for him.

So, we went, got the tests done, and then he told us to go to Kamloops. So, off in the ambulance I went, w/ Mom/June following me. Dad called Anker, and told him what was going on, and Anker was VERY shocked...and he met me at the hospital. SOOO..after two days there, they sent me to VGH. People often say this to me now..that I looked horrible (ok, not like that..but I know I did), and that I am soo much better now. I also about 30 lbs (they took off 2liters of fluid..from my abdomen).

Sooo..the diagnosis is that I have muscle weakness, and when I lie down, I only breathe 23% capacity, and 40% when I am up and around. They call it Hypo-ventilation. I also have to be careful with my salt (I have to take water pills). They say that this was b/c of my omphalocele, and the reason that I had fluid on my abdomen, was b/c of the pressure going my from my heart and lungs (breathing, etc). I also had pulmonary hypertension. I also have to have oxygen when I am walking, etc, and I have a Bi-Pap machine that I sleep with at night. I am finding that since being home, I am waking up earlier, and going to sleep earlier (remember when I would go to sleep around 12 am, and later??). I hope this all makes sense...I still don't understand it all. The main is that I am alive now...and that I may have had this all my life.

Well, I guess that is all for now....

Tuesday, April 13, 2010

Update

Just a quick one, as it is late...and I am sure that for the 2 people that read this blog, you already know that I spent nearly a month in (mainly) Vancouver General Hospital, the same hospital that I was born in, almost 34 yrs ago. In fact, in the final (private!!) room that I was in, I overlooked where I was born and stayed for the first 22 months of my life.

I am doing very well at home, with only using oxygen at 1 litre while and walking, etc. I have a sleeping (Bi-Pap) machine that I use at night (Anker calls it my Darth Vader mask), and I am actually getting quite used to it. I am sleeping quite well, and I am doing WAAY better than I was.

I am losing weight, and I am now thinner than I was when I got married, nearly 3 yrs ago. A lot of it was fluid, and currently, salt/water retention, but I will take what I can get!!

I also got a blood clot while I was there, and now I am on blood thinners for about 3 months, so that was a bit of a complication. I get blood take about 2x a week, to check my blood clotting levels. I also got some nerves in my right thumb and forearm when a Respiratory Therapist took my blood for blood gasses (needed to check my carbon dioxide levels). I was REALLY upset, as he was a student, and I shouldn't have let him try in the first place. It is getting better, as before, I could hardly move/stretch it, and I would have searing pain that would almost make me cry (sometimes, it would), but thankfully, I am getting HEALED!! It still hurts if I stretch it sometimes, but not near as much!!

I got home on Easter Sunday, and it was a great ride home, such a beautiful day!! We have to go back to see some more specialists in May sometime, and we may have to go every few months, but for right now, I am DONE with hospitals:)

Thank you EVERYONE who wrote, gave gifts, treats, PRAYED, and sent well wishes to me and my family:) Everyone has been sooo generous, and I really felt the love!!

I won't go into a lot of what happened, basically b/c everyone knows...but I will say that if I hadn't gone to Vienna's bday (which I never attended anyway...since I was in the hospital), I don't know what would have happened. One of the Dr's in VGH said that I could have died in my sleep, or (in my words) at least have gone into cardiac arrest. I am sooo glad that God chose to keep me around!!

I just find it interesting that the DR in Clearwater took only about 2 minutes to figure out what TWO (my Fam dr, and an ER doc) could not. Again, not sure what would have happened if I hadn't gone home!!

I was in Kamloops Hospital for about 2 days, and then Medivac'd to VGH. I was in the ER for nearly two days, waiting for a room, then ICU for a week, then the Step-down Unit, then a semi-private room, then a private room. The last three rooms where on the 12th (Respiratory Unit) floor.

I was blessed to have my mom there for most of the time..Anker was there for most of the time, only leaving for about 4 days, and during that time, Joseph/Cadence, Adam/Krystal came up for the weekend. My dad also came up for a couple of days.

On the Saturday (day before) I left, Anker's sister, invited Mom, and Anker and I for Easter Dinner. We had a beautiful turkey dinner, which was amazing especially since I had had hospital food for about 3 weeks. It was nice to be with them, and for Mom to get to know them a bit more. We even got some Easter Treats!! They even wanted us to pray for dinner, and this was a neat thing, since we don't pray for our meals when we are there (outloud), so we are just praying that everytime we go, we will plant a seed:)

So, I guess this should be it for now..I will try to add bits and pieces of my "Vancouver Vacation" in the next while or so...I am behind in my Diary as well. My right arm is hurting, so I can't write very long.

Nothing really new here..Just getting used to being back, and I am running errands myself, and dong light housework. I am going to two bday parties on Saturday, and we are hoping to go to the Ranch on Sunday, after our church service.

Oh, that brings me to another thing..I went to church for the first time in TWO MONTHS this last Sunday..btwn being away in Calgary, and being sick, and going to the ranch on the 7th (not sure why we didn't go..I guess I still wasn't feeling well), and being in the hosp, it had been two months. Anker had gone on the 21st of March, but this was my first time...anyway..it was sooo great to go!! It was great to see everyone again. Looking forward to going to my home church sometime, too.

There have been two new babies born in our church, and one of my friends had her baby boy while I was away..not sure of the date.

I guess that is all for now....