Some good news to share😄

Hi all,

Tania has been having some issues with the internet,… she asked me to post this up:

Great news, my.cmv levels went from 84000 to 3900 !!!! The doctors were floored. This means I get to go home on Nov.30th and no later!!!! We are so happy and grateful. In another note neurology did some tests on me and found that I am extremely deficient in B12. This could solve the neuropathy I have been having. So a pretty awesome doc visit this morning.

this is great news we are really happy and excited for her date to come home!!!

Without internet she is unable to reply to messages… fyi.

Thanks again for all the prayers and support for the family… it is very much appreciated❤️!

Marie

Patience…

I have been feeling really well. Despite being diagnosed with GVHD of the skin and finding out yesterday I have mild GVHD of the gut, actually the bottom of the colon. They have been treating me already for theses things as well as the CMV virus. They were trying to figure out which one was causing me to not absorb the medication. I need iv because of this. Steroids for GVHD and a strong antiviral for CMV .

I was bummed yesterday to hear that I would be here for another week to monitor the medication for GVHD. However, I need to get healthy so I can go home and be mom and wife again.

Unfortunately I got some bad news this evening. The medication for CMV did not work and on top of the GVHD, my cmv levels have jumped super high. Double the problems. So now this has to be treated aggressively or I will get extremely sick. This means I will be in the hospital a minimum of 2 weeks, could be longer depending on how I respond to the new anti viral they will give me. This is through iv so I need to be here. This medication is not something they love to give. It makes your electrolytes all funny and can hurt your kidneys, so close monitoring is needed .

That is the latest. I’m feeling upset, sad, missing my kids so much, missing life. It’s always hard to hear this kinda stuff. I seem to get everything and it’s really hard. I miss my cozy home. I had a really good cry and a really good chat with my nurse. I will continue to put my hope and trust in God. I pray that my kids and Aaron will also feel His presence in this situation. Living without me at home is tough. I miss normal food. I’m excited I got permission for take out tomorrow with my Dad at dinner. I’m excited some close friends are coming to see me too.

Thanks again for your continued support and love and prayers.

* edited to add that I also have neuropathy in my fingers and and still dealing with a torn artery that will last 3-6 months. The pain is still very bad. They have put me in a blood pressure med and today switched it to something stronger. They want my blood pressure below normal in hopes it will make the artery smaller and then the pain will be less. All theses meds make you lightheaded and dizzy.

My New View

Back in hospital for probably a week if not more. I’m being checked for graft versus host of the gut . A biopsy will be done this afternoon through a colonoscopy and endoscopy.

Tania

Update and GVHD

I thought I would do a quick update on what’s going on with my artery dissection .

This dissection and the transplant are not related. We do not know the cause of of it but it can be associated to vomiting and putting strain on the arteries in my neck. This is the closet thing I can think of. Often it happens because of trauma. I have not had anything happen to me. So on top of dealing with the transplant, I have another health issue slowing me down. It will be 3-6 months before it heals. I am dealing with a large tear and it will take time. The pain is crazy. I don’t know how I got through the last 4 weeks. I did have a few good days in between. It got super bad after cross country last week. I am on a lot of pain medications . I won’t be able to drive until I am off of them. I am no longer able to take migraine meds and we are hopeful that what I am taking will prevent them and keep them minimal. There is a plan in place and follow up appointments that will help me stay on top of things. I am very dopey. Seriously. I am also a lot weaker than I was a couple weeks ago but God has carried me this far, so I’m not worried. 😀

In other news, I had a biopsy done on my skin and I do indeed have GVHD of the skin. I can see the rash , or more of a discolouration of the skin but if I didn’t see it I wouldn’t know it’s there. So I am happy about that. I will continue with the steroids until it disappears.

For now I have my hubby taking good care of me and I will need more care than usual. Thankfully I have an abundance of support and my Heavenly Father providing me with all I need.

Tania

Here is What’s going on as of Today. Day +51

Thankfully the last 2 days have been so much better. Yesterday the pain was minimal and no nausea and today I have had pain and been very tired but no nausea.

So here is the story and where I am at now. Hopefully it won’t be too long. So about 4 weeks ago I had a very bad migraine. It caused me a lot of grief but I associated with tight muscles. Being a migraine sufferer I knew by week 3 that something wasn’t right. Muscle should have let up by then. The nerve pain going into my head and face also should have gone away. So I complained to my BMT doc and she sent me for an x-ray. Not sure what she was looking for in an X-ray but nothing was found. I did have a few days where pain wasn’t as intense but by the forth week it was worse. I think the reason for not sending me for a ct scan was because they did one back in September for a different pain and saw nothing. They don’t let anything go around here . Could be an infection or something related to comprised immune system. No risks.

So Friday I was puking again from the pain. I got to the clinic and got my own room so no one had to listen to me throw up. My mom told the doc something is not right we need to figure this out. They got pain meds started and anti nausea ( which didn’t help) before we talked about what to do.

The resident doc , called the attending doc and decided we need to admit me first off so I can get pain management and to get this figured out. Back in the hospital I went . Of course I had nothing with me. I should just have an emergency bag with me .

I basically rested the rest of the day and threw up and was completely out of it from being so drugged. There was a ct scan ordered for the next day. There was also a skin biopsy to be done checking for GVHD. Next day a neurologist resident came to see me. We talked about my pain and she decided to add a vascular test to my ct scan. Another attending came to see me telling me all stuff I didn’t want to hear. She wanted me to have another lumbar puncture and I was refusing. No way am I getting another of those. Let’s add a spinal headache to the one I already have, no thanks.

I went down for ct thinking they wouldn’t find anything because I had just had one and nothing was found. I wasn’t expecting to see a doc till the next day but a whole team of neurologists came late afternoon on Tuesday. It was like Grey’s anatomy. They didn’t have the full report but ct informed them that I have a tear in one of the arteries. Sounds freaky , right? They compared it to my other ct in September and it was not there in September.They right away could understand the pain I was/ am in. At this point that was the only info given. I was being turned over to stroke neurology. What often happens is the blood ends up clotting and going to the brain. However since I am on a blood thinner I didn’t get a clot , just a tear and pooling of blood. I will find a pic so you get an idea of what this looks like.

The only difference in this picture is I had blood pooled between layers of artery and this pic shows a clot. I believe my tear is in the cervical artery at the base of my skull on the left side. I’m thankful to God for sparing me a stroke. I am still at risk but it’s much lower.

Anyways, stroke neurology came to see me and I was informed that the tear was quite large. 😳 I’m not gonna lie, I was freaked out. She wanted me to go for an MRI which I kid you not was at 1am . They had to make sure I didn’t have a stroke and also check for vascularitis. Brain looks healthy though 😀

The treatment for this is pain management, high dose because I definitely need it, and time and blood thinners which I’m already on. It does mean I will be giving myself shots longer than anticipated. It can take 3-6 months to heal but I won’t necessarily have pain that whole time. So that pain managements great and all but here’s more bad news, because of the way my migraine med works with the blood vessels , I can no longer take them. So I basically was told I had to suffer migraines with no relief. Or at least that’s what it felt like. It’s the only thing that makes me function when I have a migraine. 😢 i am not aloud most over the counter meds like Advil so it’s tricky. I said we have to figure something out or I’m going to become a hermit with a ice pack in bed all the time. I have now been put on pregabalin. This med is used frequently for fibromyalgia or peripheral neuropathy ( which I have in my fingers but this could be from the dissection as well). It does cause weight gain though . 😕And at my request, I want to have a nerve block done. It works by injecting a numbing agent and steroids by the nerve.The docs never thought to do this but thought it was a great idea because my platelets are stable right now. Yay. This nerve block, if it works can last up to 3 months. Here’s the funny thing though, no one knows anyone in this hospital that does them. I was shocked. Now I have someone coming from GF Strong to come and talk to me about it but it will be after the weekend. This also means I probably won’t be home until closer to the end of next week. It’s so boring here but Aaron’s going to bring me stuff to do tomorrow. I am also waiting to find out the results of my skin biopsy.

If you are still reading this, thank you for taking the time. I maybe should have done this in 2 parts but I’m feeling ok right now and thought it’s a good time to blog. I think I will stop there. I hope everyone has a great weekend! Thanks for your prayers. I will leave you with a couple random pics.

My view

I’m right over the hospital landing pad.

A few more answers… Day 50

Just to quick late night update.

They have finally figured out a way to manage the pain for Tania which is great.   If they can continue to manage that she can go home.

It will take months for the tear to heal but it needs to do it on its own.

The blood thinners that she takes may have possibly prevented a clot !  Always looking for a little ways to be thankful in situations like this. 

She is looking forward to coming home and she’s feeling a little bit better now that she doesn’t have all the pain. She is thankful for times when she doesn’t have nausea.  She is thankful for all the care and concern that you have given her and her family.  Really appreciates the words of support. 

Day 50 today with the transplant…. and all seems to be doing great in that department she had some blood work that looks good.  

Will keep you updated but thank you on behalf of the family for your prayers and love.

Marie 

Tania needs some extra prayers

Hi all 

It’s me again … which means Tania is an able to write a blog here.

If you have been reading the other blogs  you know that she has not been feeling well and had some intense pain the last few days.

This brought her to the hospital Monday.  Yesterday she was told she has a tear in the artery in her neck. Aaron went this morning and this is the update:

“Tania has a large tear in her artery in her neck. It is quite serious but has to heal on its own and she has to manage it with pain medication. The doctor said we can expect to see a stroke neurologist soon to tell us more about it. The doctor said she was very lucky but we know she is under God’s care and protection.”

She is staying very still…. she can not reply to all the texts and words of love amd support but she is getting them❤️

Please continue to pray for doctor wisdom, strength for the family , healing and peace for Tania. 

I will update here as we know more.

Marie