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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.

Eyes, teeth, osteoporosis, allergies

Thanks to the donations I’ve received, I was able to get my sclera lenses on Wednesday. The moisture is extremely helpful; I am able to get away with very little use of eye drops while I have the lenses in. I think the prescription may need to be adjusted, and the right lens irritates my eye. Unfortunately the prescription is for distance, and anything that is close up is much worse with the lenses in. I have to wear my reading glasses most of the time when I have them in. One of the most difficult things is using the computer. In order to see perfectly, I have to be about 6 to 12 inches from the screen. Overall I am very happy with them, but I’m hoping some adjustments can be made. I have a follow up appointment on the 17th.

I had a dentist appointment on Tuesday. They took x-rays and gave me an exam. I was quoted $10,496 for the work that needs done. Unfortunately the dentist requires payment prior to work being done, and doesn’t mmake payment arrangements. The dental work must be done before I can receive medicine that will keep my osteoporosis from getting worse. Certain types of dental work can’t be done after I am on the medicine, as it would put me at risk for bone deterioration in my jaw. The medicine will be given via IV and will last for about one year, therefore it will not be as easy as stopping a pill prior to dental work being done.

The Zyrtec seems to be helping with my allergies, and I am still taking a daily pill, nasal spray and an inhaler for my lung and nasal problems. I am not 100%, but I do seem better.

My main focus going forward will be to eat more, gain weight, and gain strength. I am feeling extremely weak after the health problems I had in April, and I’m unable to do much of anything. My doctos still want to do more testing to figure out my choking issues, which continues to be a major problem.

Eyes and teeth

Eyes and teeth – 2 of my biggest problems. Thanks to the donations I’ve received, I can finally do something about these problems.

Eyes: i have ordered my sclera lenses, which I pick up this Wednesday. These lenses are a hard contact lens that I will put in each morning, and take out before bed. They are basically a bowl that is filled with a saline solution, which allows my eyes to bathe in that solution all day. If I can tolerate the lenses, it wil alleviate the need for constant eye drops while I have them in, and I should have improved vision. Lack of tear production has left me with severely dry eyes, which cause me constant pain and cloudy vision.

Teeth: I have scheduled an appointment for Tuesday (tomorrow). I will get x-rays and an exam to determine what is needed going forward. I’ve lost more weight, and I’m now below 100 lbs. Part of the reason for this is that eating is painful. I am really looking forward to getting my teeth healthy again.

Although I am no longer sick from Salmoonella, I am feeling the effects of being sick for almost a month. My strength is back down again, and I feel like I am starting out lower than what I was before I got the Salmonella April 1st (and I was pretty weak back then). It will take a great deal of work to regain strength.

Cats – I am extremely depressed that i am now allergic to my beloved pets. I am afraid to even be near them, and I feel like I am doomed just being in the house. Regardless of this fear, I continue to snuggle and love my pets, but I am washing my hands constantly. I’ve been taking Zyrtec for about a week now, and it’s hard to say whether it’s helping. I’m already on a nasal spray, an inhaler, and a pill for my breathing and sinus issues.

Goodbye Salmonella, Hello Sclera Lenses – and cats

My fevers finally stopped a couple nights ago. I can now handle being awake after 6:00 pm without body aches. The abdoninal pain has stopped, but it will probably be awhile before things are back to normal. Things are quite manageable though when it comes to the digestive system. Now I just have to eat more and put some weight back on, which is difficult when you choke on everything.

My pulmonary doctor referred me to an allergist, and I had my first appointment on Monday. Sometimes the recipient of a Bone Marrow Transplant will experience their donor’s allergies. I had allergy tests done, which confirmed that this has happened to me. I am no longer allergic to ragweed and cockroaches. I am now allergic to one type of grass, several weeds…and cats. This is the worst possible news that I could have received. I am completely devasted. We have several cats and there is no way that I am rehoming any of them. They are my family. I now take liquid Zyrtec once a day. We’ll see how that goes. This might explain the chronic cough, runny nose and phlegm that I have had since 6 months after the transplant.

As always, things are bitter sweet. Thanks to the donations I’ve received, I was able to order my sclera lenses on Tuesday! They will take 7 to 10 days to make. It will be difficult getting used to them, but if I am to, they will be a game changer. No more eye drops every couple minutes while they’re in. I won’t be able to sleep in them, but I can wear them for extended periods of time while I’m awake. Thanks again for all the shares and donations!

This week coming up I am going to schedule a dental cleaning and x-rays. It will be nice to get my teeth taken care of.

Still sick

I wanted to say thanks again for all the help with my fundraising. I really appreciate the donations & attention the campaign is getting.

The last week has been pretty rough. I’m still getting low grade fevers most nights, and I am very fatigued. I’ve spent most of the last week in bed, and spent a lot of time at the hospital. I’ve lost the little bit of strength that I was starting to gain.

I had an Endoscopy on Monday. Everything looked normal, unfortunately. I was hoping that the hourglass section of my throat (that was discovered during a swallow test) could be stretched. The surgeon’s guess is that it’s a muscular issue. Next I need to have a test done which measures the muscle pressure when I swallow. They will need to stick a tube up my nose and down into my stomach. I am not looking forward to it, but I am sick of choking. I had Photopheresis treatment Tuesday and Wednesday, and I now begin getting those treatments once each month (still 2 days per treatment).

Salmonella

I was diagnosed with Salmonella today. I’ve been sick for almost a week now. I spent the day at the hospital on Tuesday. They did blood cultures, did a CBC, took a urine sample, and gave me fluids and magnesium. The following day I was diagnosed with a Urinary Tract Infection, and today’s diagnosis was the Salmonella. I’ve had to move around several other appointments because of this, and hopefully after I start new antibiotics today I will begin to feel better. Thankfully the fevers went away after Tuesday.

GoFundMe Campaign

I’ve set up a GoFundMe Campaign to raise funds for the medical needs that I can’t afford. Unfortunately not many things are getting better for me. Most things are on a steady decline.

My donations page has been updated, and I think the GoFundMe story summarizes things pretty well. Please share my GoFundMe story, and donate if you’re able to. Thanks!