A long past few months

[Lori Patrick]

Laura, I have read your caringbridge and I really feel for you. I will pray for your healing and comfort. Rest rest rest and leave the rest to God and the doctors. Hugs, Lori Patrick

[tserdogan]

Laura,

I also pray for you.it is diffıcult to think positive sometimes,but this moments important,please you do not lose your faith to heal.

[Laura]

Getting admitted for blood clots in left leg and possible lungs....

[Laura]

Confirmed in lungs...

[mausmish]

Laura, I'm so sorry to hear this and am sending many healing thoughts your way. Karen

[evansmom]

Laura,
So sorry and worried for you.
Keeping you in my thoughts and prayers. I only hope with this admission to hospital that the doctors for once and for all finally figure out what is really wrong.

[evansmom]

I feel this is Lupus even more now. Did they confirm you are positive for the antiphospholipid antibody re: the blood clots?

Take care Laura.

[Laura]

Here is a copy and paste update I finally got around to writing:

The past bit has been very rough. Here is a brief recap.

So I had the hand surgery. A few weeks later my hip started bothering me. Shortly after, I had it injected because the thought was maybe I had inflammation in one of the joints by the hip. A few weeks after my hips started bothering me, I developed severe lower extremity edema. Then a few weeks ago, I ended up with a DVT (blood clot) in both pereneal veins of the left leg, branching into the soleal muscle veins. I also as a result ended up with an infarcted PE (blood clot in lung that had killed off some of the lung tissue due to cutting off blood supply). I was admitted. The main admission was for the blood clots and to monitor my lung and get started on anticoagulations. But they also looked into the edema (heart came back fine minus a little fluid around the heart, which they think was because I was so completely overloaded). As soon as they started lasix, I peed off about 10,000 cc from midnight until mid afternoon. They aren't sure what really caused such severe edema except I was so built up from being on the Prednisone so long. It is tricky because I need to keep moving because of the blood clot and edema but with my hip and hand it makes it difficult. While in the hospital, they continued to work up my hip because it still hurt greatly and the injection did nothing. I went to my follow up appointment while admitted and he ordered more testing.

I got discharged about a week ago. Edema was under better control and got sent to the lymphedema clinic to learn wraps, etc, to help control edema. Also on daily lasix.

I am taking Coumadin to keep the clots at bay.

This past week, I had the bone scans, MRIs, 3D CT, etc of the hip/pelvis region. Come to find out I have a stress fracture of the right sacral bone. I tell people hip because most people would not really understand what I just said. But that was the theory for the past few weeks. The sacral bone is connected to the pelvis. So it is really hard to immobilize (you basically can't) and it moves pretty much with any movement you do. So I am nonweight bearing and can gradually increase weight up to 50 percent based on pain....no pain..can increase weight....pain...back off on weight...It makes it difficult because my hand is still sensitive to long distance crutch usage. And the doctor wants me to use one of those walkers that has the chair on it. I find crutches easier for short distances....but long distances I am so de-conditioned it is really hard. I just sit on the chair and Ryan pushes me. We call it a walker-wheelchair...I know it's not supposed to be used like that....but whatever works, right? My follow up apt is in eight weeks.

By doing the wraps from the lymphedema clinic and lasix I feel much more comfortable fluid overload wise.

DVT/PE status quo...still have chest pain, coughing, etc...but that is getting better.

Skin/Mouth: I will come back to in a different post as this has taken a backseat.

Then this past Wednesday my nose started gushing and wouldn't stop except for a few minutes here and there. I went to the ER twice...and finally yesterday went back a third time and saw ENT this time. Who cautarized (sp?) it and re, repacked it to be left in until Monday, in which they will see me in their clinic to remove packing and evaluate. My INR level was higher than wanted so that probably didn't help matters...nor the low platelets....but all the bleeding did drop my HGB down to 10 from the normal 13 or so. So this is the first big test of my bone marrow in regards to red blood cells....I hope to see that number creep back up and up.

That is a very, very quick run down...

[evansmom]

Laura,

You know how I feel. What you are having to deal with is beyond unfair.
Keep fighting, keep taking it one day at a time.
I know I write for everyone here when I remind you of how amazingly strong and patient you continue to be. Your will to survive and tackle each new issue with an "OK, what do we need to do to fix this problem; let's deal with this now and get back to that later" attitude astounds me.

Your ability to stay on top of all of this, and advocate for yourself and organize and keep connected your team of specialists involved in your care all the while feeling like a bag of **** is to be commended.

Keep going Laura,
thoughts and prayers for a turn around ASAP.

[mausmish]

Laura, Everything Nicole said, ditto! I keep hoping you will soon get some relief. Hugs, Karen

[squirrellypoo]

Oh Laura, I'm so sorry you're still adding on the issues instead of them going away. You've suffered so much, and you're so strong to still be keeping on top of everything like you are. Nicole said it best. Take care, we're all thinking of you.

[Marlene]

Laura,

Hope you start having more good days than bad. I know you are more than ready to put this behind you. You've had to deal with so many issues.

Hang in there!!!!

[Lori Patrick]

Laura, You look great in your picture on Caringbridge! That is a positive. I'm so saddened at all of the hurdles you have before you. Hopefully this will all level out. My Dr keeps telling me the gvh will go away eventually. One thing I notice about my treatment that may be different is that my Dr only leaves me on high prednisone for short time periods. I had a major skin break out and he put me on 60 (the highest I've been on) for 1 week and then slowly weaned me to 10. Now I am at 15 due to my liver numbers being slightly elevated. However now my kidneys are a bit aggitated, which they are contributing to CMV. Wear your mask while in public - measles are going around here.....

There is sunshine at the end of the tunnel. I have you in my prayers and pray for your comfort and healing. Hugs, Lori

[evansmom]

Unfortunately Lori, that is a dated picture of Laura. Not a current reflection of the horrors she's been through and is still dealing with.

Laura needed the long term high prednisone due to her extreme photosensitivity. She has been living in utter darkness (literally and figuratively) for a long time.

All her serious problems have now taken a back seat while she battles life threatening issues of blood clots, water retention and possible liver disease.

She really does need our thoughts and prayers, Laura is such a valiant warrior, fighting harder than anyone I've ever 'met' here or anywhere along our journey.

[tserdogan]

Yes Laura,we are all thinking and praying you.

[Lori Patrick]

I realized that that was a dated picture - she looked good there tho - something positive. I realize she is going through a lot -- Evansmom.

Laura - When you feel you cannot do it alone, curl up in Jesus' lap. I pray for comfort and healing for you. Hugs, Lori

[Laura]

Dare I even post this.....

Yes, you guessed it....my gut has been awful for almost three weeks.....I had gotten down to 10 mg Prednisone daily......and my gut is so awful......back up to 60 mg as of a few days ago.....I just pray it works......

Thanks to everyone for the wonderful and kind messages. i greatly appeciate them...im sorry i cant reply indivivually....

laura

[Debbie W]

Hoping they can find the right balance soon, just use your energy towards that goal.

Originally Posted by Laura

Dare I even post this.....

Yes, you guessed it....my gut has been awful for almost three weeks.....I had gotten down to 10 mg Prednisone daily......and my gut is so awful......back up to 60 mg as of a few days ago.....I just pray it works......

Thanks to everyone for the wonderful and kind messages. i greatly appeciate them...im sorry i cant reply indivivually....

laura

[Laura]

Since Sunday have had multiple symptoms and found out yesterday I have influenza A and some consolidation, etc in my right lung. Each day I have progressed worse and now heading in to get admitted as I am so short of breath, etc....

[Lori Patrick]

Laura, I pray that the hospital stay will be a positive one. You are in my thoughts and prayers.

[evansmom]

Thinking about you today Laura, hope things are a bit better.

[Marlene]

Sorry to hear this Laura. Hopefully they'll get handle on it quickly so get some relief sooner than later.

[Laura]

Aother copy and paste from my site....sorry guys...just way too tired....


So much to update, I don't even know where to begin......

So the weekend after my last entry, my rib pain got worse and worse. And I noticed SIGNIFICANT bruising. It literally looked like I had been beat up. Purple and blue and massive hematomas. So to the ER on Sunday I went. Plts 30s and INR 5.6 (they want mine between 2-3 for the blood clot. Normal is around one.) So no wonder the massive bleeding. I also had some blood tinged sputum, coughing uncontrollably, all the other flu symptoms....high fever, aches, cough/congestion/etc. So needless to say I earned myself a ticket inpatient. I got an ambulance ride over to Methodist Hospital from the ER. I was admitted onto the BMT floor at Mayo. I got two units of fresh frozen plasma and one unit of platelets. Also started on some pain meds for the rib pain. It was very busy with different services coming in and out. Then after my platelet transfusion my platelets continued dropping and my HGB has been in the 9-10 range. So they decided to do a BMB.

I just got the results yesterday/today. It is hypocellular (10-20%). There were basically no megakaryocytes (baby platelets) in the marrow to even count them. And both the reds/whites were low. They were worried this was an ITP issue but said it can't be the case with what the results have shown so far. So far I have needed platelets every five days. The doctors thoughts/theories:
1) My marrow got kicked down from the flu and everything else that has gone on (DVT, PE, broken bones, etc). After a few weeks, it will recover back to where it was.
2) The graft is failing to seed and grow in the spaces needed to make adequate blood counts. (Worse case scenario). I pray to God not.

Okay, I am jumping around. I am also so very tired so might have to cut this short here and finish tomorrow.

In fact, I think I will do just that as I could fall asleep typing this....more tomorrow.

[squirrellypoo]

Oh I'm so sorry to hear more bad news, Laura. Each time I see a new post from you I'm hoping it's some happiness that's finally caught up with you. Keep fighting, you're doing SO well in the face of everything. I'm thinking of you often.

[Laura]

Thanks everyone......once again......a copy and paste.....

FRIDAY, APRIL 20, 2012 10:48 PM, CDT
HOME!

After almost three weeks inpatient, I am home. Got home not too long ago. Very tired and need to catch up on much needed sleep.

HGB down to 9, transfusion dependent on plts. Whites remain okay, but I am also on Prednisone.

I will be followed at station 94 outpatient (BMT) for a bit here. It sounds like they will give the counts 3-4 weeks to recover and if no recovery noted possibly another BMB and go from there. Please send those prayers that my counts just got knocked down from the flu and all.

I still can have significant pain in the rib area. It just stinks because you can't immobilize the area like you can a broken leg. If I try and sleep on my right side to keep weight off my left ribs, my healing sacrum fracture aches like crazy. So it is hard to get comfortable to sleep at night. The ribs are wrapped, which is nice, because it makes it much less sore overall.

Since I got admitted, I have been getting platelets every 4-5 days through my PICC line. My HGB was in high 9 range but has dropped off to the low 9. I have needed Potassium supplements here and there. My liver enzymes were sky high, but are coming down and all tests have come back negative. Requiring insulin from the high sugars related to Prednisone. Having issues with high BP but monitoring it for now. Sometimes systolic can get as high as 150-160 and diastolic 90-115. Still having issues with fluid overload at times requiring Lasix. My calcium was low while inpatient so was put on calcium supplements and it improved. When I was first admitted my Mag was very high but that also has improved. Status quo on the blood clot in the leg. The blood clot in the lung still provides some shortness of breath and xrays show ateletacisis and there are decreased breath sounds in the area.

While inpatient my mouth GVHD flared greatly and I was restarted on prograf/decadron swish and spit and my mouth is much improved.

My skin issues were pushed to the side as not the main focus right now due to everything else.

I am sure I am forgetting something. I am so tired so I am off to bed. Will update more as able.