Updates from this weeks appts.

Tuesday: Neurosurgeon says - surgery is only 2 hrs, hospital stay maybe 2 days, will go home to tend for myself, follow up appt in 2 weeks, my neck/arms/hands should show improvement within 2 months of surgery, if not than he will have to go in the back of my neck and do more work.

Wednesday: Hematologist - will repeat blood work in a year, said that once a person acquires (gets) lupus anticoagulant it doesn't go away - need to stay on Warfarin for life. I'll go on the shots starting the 4th and remain on them until I'm up to 2.0 INR following the surgery. I will do my INRs at home starting 3 weeks after surgery.

Thursday (today): PH appt. what a joke - Dr P said based on my RHC he doesn't think I have PH but "some kind of lung condition". He says my numbers weren't high enough to be PH.My 6 min walk today was only 150 meters or 452 feet - the same as Oct. no change in the walk, I did lose 8lbs since Oct. - I almost passed out twice and was very SOB. My 02 again started out at 94 and went up to 100. Heart rate went from 80 to 100.

I had a fluoroscope done to see if my diaphragm goes up and down with big breathes I almost passed out there as well and I have to go back next Wed. for a PFT Pulmonary Function Test and blood oxygen gases, I just love those yea right, this test is done in the artery of your wrist.

Dr P is thinking the pinched nerves in my neck could be causing my SOB with movement. He thinks the decompressing of the nerves is the best thing for me right now. I will know more next week after the other tests. He is looking for Interstitial Lung Disease - Pulmonary Fibrosis.

I'm more clueless about the SOB and PH than I ever was, I don't know what to think regarding this.

Other than all that I'm just hanging in there I read and pray - posting is getting harder each day. Thanks for all your love, prayers and support. Talk to you all soon, love Deb

Struggles I'm Dealing With

Hebrews 4:16 ~ Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

2 Corinthians 12:9 ~ "My grace is sufficient for you, for my power is made perfect in weakness."

Many of you know I have been going through the wringer - inside I have been okay until last night I actually cried and prayed for 2 hours. My strength does come from the Lord. When I pray for myself it seems like I just touch the surface, prayer to me is always about others first me last. I can't remember that last time I prayed for me like I did last night. I know others are praying for me, so I think I don't need too, I am wrong we need to pray for ourselves as well. We are to carry one an others' burdens - we are to give it all to the Lord including our personal needs.

Here's what's been going on:

The passing of little Nikolas has affected us all - I go to their blog and I still cry - I feel the pain that Siv is going through - it almost feels like I lost another child - a feeling I can't explain.

Tuesday: I got my test results back from the breast surgery good news -No Cancer thank you Lord. It turns out I had an infection brewing with blocked ducts. Thanks to a great surgeon the blocked ducts were removed and the antibiotics will take away the infection.

Thursday my PCP informs me I have Dawn Phenomenon - it is where my body decides to raise my sugars in the middle of the night - so when I wake up and test my fasting sugars they are high. I have been in tight control of my diabetes since I was dx'd last yr. When I asked her if I will be able to get off some of the meds she said "sorry" it's genetic for you, you have no control. So now I have to take more meds this is so frustrating. I can't exercise so I have to watch everything I eat. I have lost 5 lbs since Nov. that is good.

Friday I decided I need a break - so I went downstairs to the Garden Room and learned how to play a card game called hand and foot. You got a wood board to hold all the cards which was good for me. There was 6 of us I being the youngest and eldest was 91. I had a great time. I got to my apt. and had a message on my phone to call the hematologist.

I called them back only for them to tell me I am not therapeutic yet - it's been 10 days since surgery and I should be above 2.0. I can't get there if my life depends on it. I watch everything I eat making sure it does not contain Vitamin K. Even increasing my blood thinners isn't helping, still I'm only at 1.7 on surgery day I was 1.0. I don't get it, she was understanding but what could she say except we need to increase your meds again.

Next Week:

Tuesday: I see the Neurologist to make the necessary final steps before neck surgery - getting more Prednisone and antibiotics prior to, filling out all the paper work and find out if I need to go to a rehab place etc....

Wednesday: I will be having blood work done to see why the Von Willis Brand (bleeding disorder) and the lupus anticoagulant (clotting disorder) are causing havoc in my body. I'm even bleeding a lot from my finger pokes.

Thursday: I go see the PH Dr. and begin treatment for my exercise induced PH, of course that does mean more meds. Please forgive me I am not complaining about taking the meds I am just get tired of taking so many them - I know many of you take a lot more than me.

Friday: I will go to church to do the attendance folders come home and sleep the rest of the weekend. I think I will need it after my long week.

That is it - that's what's going on - I know there is a light at the end of the tunnel, it feels like a long way off. I am not trying to complain about my life, I think I finally woke up and realized all that is going on and I am in more need than I thought.

I know that God's grace is helping me get through all this, there is no way I could do it by myself, I just needed to verbalize what is going on. He never promised us a rose garden without the thorns. Thanks for reading, I'll post when I can, love Deb.

Our Littlest Angel

Matthew 5:4 "Blessed are those who mourn, for they shall be comforted".

It is so hard to write today - I am sadden to tell you that little Nikolas has gone home to be with the Lord this morning.

Please pray with me for the family - Siv, Jim and their other children Jim and Bikkji Dina. Nikolas has suffered so much from PH and he was only 1 year old.

I have been following Nikolas' story since Oct. I can't tell you many much I have cried and prayed for Nikolas, he truly was a remarkable little boy and fought a hard fight to the very end.

I pray for comfort to Siv and family, that they receive peace that will pass all understanding, strength to endure without Nikolas. May the touch of the Lord be upon this family today and always. Love you Siv, Deb.

Rest is what was ordered!

I had my surgery on Tuesday the 13th, came home on Wednesday. I just wanted to let you know I am okay, I am to rest as much as possible and do nothing. So I am resting in the Lord's hands.

I take my medication for pain and rest a few hours - I get up eat and go back to sleep. I will not get any results to the large chunk that was taken out until the 20th.

Frozen Ice Outside my Window

My Dr. called last night to make sure I was doing alright and that I was staying indoors, he said I shouldn't go out until my next appt. It has been below 0 the last few days, even schools have been closed. I think I will stay inside where it is warm.

Thank you for all your prayers I will post next week when I know more. Blessings to you. Love Deb.