Archive for the ‘ Transplant ’ Category

Staying Out of the Hospital

I’m just posting a short update today, starting with a little bit about my health: I have been feeling very weak and fatigued and am barely able to eat, but Itsa has been helping me get some nutrition anyway. The dry heaving and the nausea are still there, but it’s been getting better.

I’m happy that I’m no longer in the hospital, I’m glad to be home and that my husband is taking very good care of me in my weakened state. Shoutout to my grandmother, as she has been trying to come and see me but she’s too sick—I love you and miss you, Grandma!

I am also very thankful for and to my mom: she did grocery shopping for us, brought me food, and takes me to all my appointments. Aunt Ellie came over today as well, and brought some excellent candied sweet potatoes (made from scratch!) and some beef stroganoff.

Two things I’m excited for: first, I just got a brand new desk, which means more room to put more stuff on for my little personal sanctuary. Second is pretty big news: my husband is planning a trip back to Omaha on the 9th or 10th of October to get the rest of our stuff, including my car! It will be a great relief to have our things here.

So far, so good, and some pretty exciting things to look forward to. I am taking baby steps towards getting stronger.

Thank you for reading, and for your love and support!

The Good Things

My last post was a bit depressing, as I wanted to paint a good picture of just how sick I am and how dire things are. There are some good things that I failed to mention which are deserving.

Since the move, we have been getting food delivered 3 days a week through my mother’s church. The food and the people have been amazing! They’ve gotten us quiche (three different types, all delicious!) a lot of casseroles, which are easy for me to eat, and a lot of fruit and good desserts too.

One of the best things is, living down the street from my mother has been priceless. It’s taken some of the load off of my husband. She lives about an hour away from the hospital but she’s always willing to drive us there. Thankfully she’s able to take off work, usually with little notice even, to do just that. Yesterday she and my husband had to drive all the way back home to get some of my medication that the hospital didn’t have.

I was also happy to receive the warm and fuzzy welcome that my cats gave me when I came home last week. One cat missed me so much that he hogged my lap for a long time and none of the other cats could come close! The kitties have adjusted very well to the new place. They seem to like it a lot more and they’re getting along better with each other. We’ve also had fewer accidents outside the litterbox.

I’m also thankful for my online friends. I managed to play some video games online with them last week.

My friend Dee has been such a blessing. Last week she was able to come over and spend some time with me, even spending the night a few times. I’ve also had some family visit me as well: my Uncle Jim, my Aunt Donna, and my Aunt Ellie. Aunt Donna brought me some apple cake she baked, and it was incredible, one of the best things I’ve ever had!

Rummaging around in my closet, I found some giraffe socks my mom gave me last Christmas that were very fuzzy and warm and they even go over my knees. I was wearing them when I went to the hospital recently and everyone agreed they were awesome.

Speaking of, I was back in the hospital Thursday night. I started having a headache, dizziness, nausea, and vomiting last Sunday, and it continued to get worse throughout the week. My doctor ordered a CT scan on Thursday. They over sedated me in the ER before the CT scan, and when I woke up I could barely breathe. There is no reason for the shortness of breath, everything checks out just fine, so we think I just need to get the medications out of my system. I was just under observation, but I start to feeling right until yesterday. Thankfully it is a beautiful day of light rain and smells of grass and flowers.

As always, thank you so much for your love and support, it means a lot and gets me through this!

Big changes: moving, treatment, everything

As usual, I am making this post much later than I wanted. I’ve had family & friends visiting a lot over the last few weeks, have been very sick, and have been inundated with appointments.

Treatment: I’ve gone through 3 rounds of IV chemo (5 days, 10 days, 5 days), and a few weeks of a chemo pill. I’ve had multiple injuries, infections, antibiotics, vomiting sessions…I’ll spare the rest of the fun details. The good news is that I appear to be cancer-free at the moment, though there are likely some “bad cells” hiding out somewhere. I begin a 4th round of 5-day IV chemo on the 18th. I’m also now on oxygen 24/7 after my lungs continued to get worse, partly due to more pneumonia.

After that week of IV chemo, we are moving back to my home town of Pittsburgh, PA! My husband and I are completely exhausted, and we just can’t do this anymore. We are slipping…missing meds, missing appointments, late to every appointment, and just completely unorganized and behind on everything. I have a small army of a family that can take many burdens away and allow us to focus on what is most important: healing our bodies and minds. Switching hospitals at this point in treatment with such a complicated history is a nightmare, but it will have to be worked out. Most likely, I will stay on some kind of regular IV chemo regimen to keep me in remission. I will continue to need treatment for the GVH (Graft vs Host) problems I have.

A huge thanks to my friends and family here in Omaha and in Pittsburgh. My family is trying to raise enough money to make this move happen. Once again, I ask that if you have the ability to make a donation, please do. There is a GoFundMe link at the top of each blog page. I have used prior donations for dental work and specialty lenses, but I really need help getting home within the next couple weeks. I am immensely grateful for everything that has been donated, and amazed at the amount that I have received. Eyes and teeth are very important!

I will post another update as soon as I am able to. In the meantime, stay frosty :)

Been a rough summer

I have not been feeling well and have had an insane amount of appointments. I apologize for the lack of updates during this time.

Skin: After decreasing the prednisone, I began to have problems with my skin. My arms swelled up to the shoulders, my legs swelled from my calves up to the top of my thighs, and my lower abdomen swelled around my entire body. The skin in these areas became hard, tight, and thick, making it difficult to move. The skin is also lumpy. This has caused a great amnount of pain and discomfort. I have been diagnosed with skin GVHD (Graft vs Host Disease). Apparently this is one of the most difficult types of skin GVHD to treat. How is it treated? Photopheresis and anti-rejection meds. We moved me from monthly photopheresis to weekly and started me on Sirolimus, an anti-rejection medicine. The Sirolimus causes urinary issues, edema and abdominal swelling for me. It also gives me very shaky hands/tremors. Photopheresis is usually a 3 to 4 hour treatment, and is given 2 days in a row. In other words, each completed treatment is a 2 day ordeal. Per my GVHD doctor, decreasing prednisone too fast can cause the skin GVHD to spread. I had a very small amount of it unknowlingly prior to the prednisone decrease. I will begin seeing a dermatologist in a couple weeks. I have also just started a new medicine for GHVD called Jakafi. It’s been recently approved by the FDA for treatment of GVHD where prednisone failed.

Strength: I’ve also been going to physical therapy 2 days each week. My range of motion and strength are terrible, and many parts of my body are seized up, especially with the skin GVHD…for example, I can’t straighten my elbows or knees. I will begin occupational therapy in a couple weeks, which will address my hands. I was able to puchase a quad cane, which has been a great help. My knees still continue to give out if I bend them too much.

Eyes: My right sclera lens has been running the eye. I developed a cyst on my eyeball because of this, and have had a total of 3 lenses for that eye now. My warranty has expired, so the next one I order I will have to pay the $400 full price. My doctor is looking into having the lens vaulted in the section where it’s rubbing my eye.

Teeth: Pehaps the best news – I have begun to get dental work done, thanks to the donations that I’ve received! So far I’ve had 3 teeth pulled and 6 cavaties filled. Most of the cavaties were fillings that had fallen out of the front of my top teeth . I am no longer scared to smile. I have a lot more work that needs done, but it’s a good start.

Gut/Food: I’ve also been disgnosed with GHVD of the gut and put on a new medicine for that. It’s a steroid medicine that coats my digestive system. I’m also back on an acid reflux medicine. I feel a little better now that I am on these meds. Fortunately I have been able to gain weight, and I’m at a healthy weight again. I continue to have a very dry mouth and choke on just about everything I eat, so the eating has not been any easier, especially after having 3 teeth pulled.

It’s getting increasingly difficult to manage my meds and appointments. I’m up to about 20 medications, and I don’t even know how many specialists I am seeing. I can’t swallow pills, so they either need to be crushed or they have to be liquid. I have been sleeping a lot, and I’m back on pain pills, mostly for my mouth and legs. I spend a lot of time with my feet up because of the pain and swelling in my feet and legs. It’s quite unpleasant.

Of the donations that I have received so far, I have enough to cover one more set of fillings at the dentist and 1 replacement lens for my right eye. Anything that you’re able to send my way is greatly appreciated!

Time flies

I didn’t realize it had been this long since my last update. I guess time flies when you’re having fun? There have been a few things happening over the last couple weeks.

First, my mother in law got married on June 3rd. It was a great time, and a beautiful ceremony right in their back yard. It was great to see my sister in law, her husband, and their 2 girls. It was also great to meet my father in law’s brother and his wife, and all their friends. Congrats to the newly weds!

My contact lens prescription was changed on the left, and the fit was changed on the right. This Thursday I have my 2 week follow up with this set. The left one feels great and the vision is much clearer. The right is still giving me problems. It gets foggy to the point of having to remove it, clean it, and put it back in, sometimes several times a day. It also seems like the area between my eye and the lens is not always holding saline and dries out. I also think that the prescriotion needs to be stronger on the right lens. Thankfully we still have time for the manufacturer to make changes free of charge.

I had a swallow test scheduled for last Tuesday, esophageal manometry. They were going to send me home with a tube down my throat for 24 hours to measure my acid PH level. They discovered scar tissue in my esophagus during my last endoscopy, and want to see how bad my acid reflux is. I am currently not taking any medication for it, and it doesn’t bother me too much. I was unable to do the manometry test unfortunately. There was a great deal of trouble navigating the tube from the back of my nose into my throat. As soon as the tube touched my throat, I gagged, choked and dry heaved. I also couldn’t breathe. It was horrible. We tried several times but it just wasn’t happening. The manometry test also shows them where to place the tube for the acid test, so they couldn’t do that either. I can’t say I was terribly upset, as I was not looking forward to having a tube in my throat and nose for 24 hours. I have a follow up with my GI doctor in the next couple weeks, so we will have to get a plan B going.

Tuesday and Wednesday I had Photopheresis treatment. It went well. It’s always nice to see the Red Cross nurses that do the treatment. It was the first time I had treatment at the new Fred & Pamela Buffet Cancer Center. It’s absolutely gorgeous with blown glass sculptures and artwork everywhere. Everything is brand new over there, including heated recliners in the treatment area, which made me pass out. For the first time, I slept through treatment…both days :)

I am still having a lot of difficulty with the prednisone side effects. I am retaining fluid, and have swelling in my face, arms, legs and feet. I have a great deal of muscle weakness. I am now on medicine for my bladder issues, which is helping. I am very shaky too. We are slowly reducing the doseage, so it will probably be a few weeks until I am completely done with it.

I fell again this last Friday night coming up the stairs into the house. My right knee gave out & it hurt pretty bad. It’s still sore, but I don’t think I did any permanent damage. I am nervous even walking around the house, the knees feel like they are going to give out at any time. I am being as careful as I can. I’m considering getting a cane that has the rubber feet.

I am slowly gaining weight, but my dietician wants me to gain faster. I was down to 96 pounds, and I am about 106 now. I should be about 115, or 125 with my usual amount of muscle. I have been eating as much as I can, and doing Muscle Milk. I’m also adding peanut butter powder to my cereal, and have switched from almond milk to whole milk in my cereal.

Overall I am doing alright, but I have a long way to go before I can do anything indepently. I’m finally feeling well enough to start walking on my treadmill again. Good thing I have something to hold onto while doing that!

Weight, weak, many updates

I skipped last week’s update because I haven’t been feeling all that great. I have been on prednisone for almost 3 weeks now. I am very shaky and weak, dehydrated, constipated, and I am having bladder issues (back in diapers again). I am also bloated with abdominal pain and I am beginning to have edema (swelling) in my legs and feet. For all these reasons, I very much dislike steroids. However, they have helped my breathing, my joint pain and increased my appetite…but not completely. I am waiting on urinalysis results to see if I have another UTI. I took my first walk on the treadmill in 2 months, and it was much more difficult this time. My joints and muscles are very sore, and walking helped to stretch things out a bit. 10 minutes was all I could handle.

I had my 6 month follow up appointment with my cancer doctor on the 16th. She is very concerned about my weight, and wants to put a feeding tube into my stomach. I weighed 97 pounds at my appointment. Normally I weigh about 125 pounds, but due to loss of muscle, my new normal is about 110 to 115. The salmonella that I had last month really took a toll, and I am feeling much weaker than I did prior. I have been given 6 weeks to increase my weight. If I don’t, my doctor will be pushing hard for a feeding tube. I have been eating as much as possible, which is difficult with my choking issues and general lack of appetite. A friend of ours gave me some Muscle Milk powder that I mix with chocolate milk. I’ve also been adding peanut butter powder to my morning junk food childrens cereals (CoCoa Puffs & Peanut Butter Cap’n Crunch). So far I have gained about 5 pounds, which I am very happy about.

I also had a follow up appointment with my eye doctor on the 17th. The right contact lens doesn’t quite feel right, and my prescription feels like it needs adjusted. He said the fit looks good but discovered that the prescription is definitely off. He wants me to wear the lenses for another 2 weeks before making any adjustments. Fortunately the manufacturer allows 90 days for any such adjustments. Another pair would be made, so I would be able to continue wearing the current lenses while waiting for the new pair. These lenses have been life changing, and I can’t thank my donors enough for funding them. I put them in about an hour after waking up, and every day my eyes are starving for them by that time. They provide instant relief for my dry painful eyes, and the last thing I do before bed is take them out.

I need to get started on my dental work, but I haven’t had the energy to look into it quite yet. A Red Cross nurse that does my Photopheresis treatment recommended a dental discount program that his church referred me to. I will be looking into a second opinion through that.

Yesterday was my birthday, and it was a beautiful day. I got to get out of the house for a bit, run a couple errands with my husband, and we had dinner with friends. My mother in law and future (this weekend!!!) father in law stopped by to bring me some goodies. I felt decent enough to enjoy the day and it was quite nice. I also received 3 donations through my GoFundMe Campaign, which was a nice surprise! Thanks to my awesome donor friends :)

I have another follow up with the eye doctor this Thursday, and in a couple weeks I have my next swallow test and monthly Photopheresis treatment. I also need to work on getting a couple of prescriptions that either aren’t covered by insurance or are too expensive.

Edit: I forgot to mention that I fell a couple days ago. This is the second time I’ve fallen. The first time was last summer, and I hurt my tailbone when it happened. Luckily I did not hurt myself this time, and my husband was home to pick me up off the floor. I basically stepped forward too fast and lunged forward, putting too much weight on my left knee. The knee gave out, and so did my left ankle, which caused me to slowly sink to the floor. It happened in the bathroom, so I had many close objects to put my arms on while I fell onto my butt in a sitting position. Once I am on the floor, I can’t easily get up. The joints in my hands and wrists don’t allow me to push off the floor. It’s scary how weak I am. I do not trust my legs at all, and would not be safe anywhere without the support of someone with me. It’s a good thing that my husband has the ability to be around most of the time. I am extremely thankful for this!

More upcoming tests, general updates

First, thanks again to everyone who has helped with my fundraiser. Day to day life has been a bit more manageable, but I still have a ways to go on my dental treatment.

The last week has been pretty busy. I had my Photopheresis treatment on Wednesday and Thursday, and I had an appointment with a new doctor on Friday for my choking issues.

Photopheresis went well, and the bloodwork that was done prior looks good. I am low on a few things, which is a result of poor diet and lack of muscle.

My Fiday appointment was basically a consultation. I had an endoscopy a few weeks ago, and a biopsy was taken of some scar tissue in my esophagus. I have 2 tests scheduled for June. One is a esophageal manometry. The tube will be left in for 24 hours to also test my acid levels. I am not looking forward to all this, but I am sick of choking on everything!

My contact lenses are working out quite well. Although I think some adjustments need done, overall I am very happy. It’s amazing to be able to go outside without having to close my eyes and rely on drops every few minutes. I no longer feel like I have a foreign body on my eyes, and they are much less painful.

I have been put on steroids for the next couple weeks. Although I hate steroids, they do help with a lot of things. My breathing has been better, and I have a lot of energy. I will take advantage of this to rebuild some strength.

This week I have my 6 month follow up with my cancer doctor, and I have an appointment to have my contact lenses checked.