Hello LLS Friends,
This is Jerry, Dean and Betsy's son. My mom wanted to update the website but has not been able to get to a computer the last couple of days.
Mom and Dad were down in Houston for a follow up appointment with Dr. Andersson. They also had an appointment with the rheumatologist to assess the condition of Dad's ankles. Dad had a CT scan of his lungs on Monday to assess the condition of his lungs after having the fungal pneumonia about a month or so back. The CT of his lungs was much improved from the last one so this is good news. Dad has been drinking lots and lots of water because of all the medications he is having to take which can be toxic to his kidneys. Dr. Andersson was concerned with some of Dad's kidney lab values and wanted to have Dad stay in Houston Tuesday to get infused with some IV fluids to get better hydrated and then double check his kidney values on Wednesday. They also saw the rheumatologist on Monday and they ordered an MRI of Dad's ankles in order to determine the source of the pain that Dad has been having in his ankles recently. On Tuesday evening when they were in the waiting room for Dad's second MRI of his ankle Dad spiked a fever and began having chills. They decided it was best to head on down to the ER to start some treatment for his fever. The doctors have Dad on a couple of different antibiotics as well as an antifungal and an antiviral. They stayed down in the ER all night last night and thru the day today and are still down there at this moment...it is really busy in the hospital!!! His fever has spiked a couple of times during the day but has been okay since about 4 this afternoon. While they have been waiting to get a room they went ahead and performed another MRI on Dad's other ankle. They later found out that Dad has a condition of the bones called avascular necrosis in his ankles. This condition causes the blood vessels that supply the bone tissue to not be able to supply blood to the tissue and it starts to decay and degenerate. This condition can be caused by many things but in Dad's case was caused by the high doses of steroids he was on before and after transplant. Unfortunately, the condition is irreversible. Hopefully they will be able to manage this condition with physical therapy/walking/foot aids that can take some of the weight off of Dad's ankles and prevent further degeneration of the bone and joints. I will try to keep everyone posted on any new news of Dad's condition.
Also, I would like to update everyone about Dean's dad, my Grandpa. As you might have read, Dean's Dad had a mild heart attack about a month ago. He was recuperating from that and about a week ago had what he thought was another heart attack but found out was a diseased gall bladder that was causing him a lot of pain and also putting stress on on his heart. He was scheduled to have his gallbladder removed this Friday and had met with surgeon on Monday afternoon to talk about the surgery. On Tuesday morning while eating breakfast with family, Dean's dad started having chest pain again. He couldn't tell if he was having chest pain from his gallbladder or his heart but it was bad enough they had to call 911 and he was taken by ambulance to the hospital. They drew blood to determine whether his pain was from his heart or his gallbladder and found out later on that day that he had suffered another mild heart attack. He is kind of between a rock and a hard place because he needs to have his gallbladder removed but his cardiologist wants him to wait at least 2 weeks to let his heart recover from this latest heart attack before undergoing surgery. Also, they will have to take him off of one of his main heart medications, Plavix, because it is a blood thinner and can complicate surgical operations. The doctors think that the when the gallbladder is causing him pain that this is raising his blood pressure and heart rate and putting stress on his heart which is already in a precarious condition to begin with. Hopefully he may be able to go home by Friday if he is having no more chest pain and is tolerating eating well.
Please keep both of them in your prayers!!!!
Good to "meet" you, Jerry. But the circumstances suck.
My mom had avascular necrosis so I know sopmething of what your dad's facing. Along with the infection it seems like Dean's back up to his old tricks. Tell him I said to cut it out. And tell your mom to remember two steps forward and one back is still a net gain of one step. Sometimes we have to settle for four steps forward and three back, though.
I am glad his lungs are better. Guess that's the step forward here.
Give them both my love and let them know their in my heart and mind. So is your grandfather.
Thanks for the update. It's going to be better again someday soon.
Thank you for the update. I'm sorry to hear about your Dad's ankles and hope that they're able to get him some relief soon. I'm glad to hear that his lungs are better.
That's a tough situation for your grandfather. I'll keep your family in my thoughts.
From a daughter of a mother who battled cancer to you the son, I just want to say that we all are proud of the son you are, even though we may not know you, we understand the shoes that you walk in everyday and I am sure you give so much strength and hope to you parents!
Sorry to hear about your fathers latest condition. He sure is a trooper along with your mother. Keeping them and his ankles and lungs in my prayers, along with your grandfather!
Jerry, thank you so much for the updates on your dad and grandpa, I will continue to keep both of them in my prayers. You come from a family of tough fighters! I hope they are both doing better soon. I never heard you could get Avascular Necrosis in the ankles, I've only heard about people who have gotten it in the hips, but it makes sense you could probably get it in several places in the body. Hope the kidneys look better, too. Thanks again for keeping us posted.
Hello LLS friends. This is Betsy here and I just wanted to thank you all so much for your kind words to our son Jerry. Dean was discharged from the hospital yesterday and we are back at home. He hasn't had fever in 4 days so they feel that the infection is under control. Last week his fever was 104.4 several times and each time the fever was preceded by horrible rigors/chills. They changed him over from IV antibiotics (vancomycin, doxycillin, merrem, and caspofungin) to oral (doxycillin, cipro and fluconazole) on Sun. and he stayed fever free which is good news. Before being admitted for fever he had been battling a lesion on his stomach that wasn't healing well. It wasn't getting worse but it wasn't getting better either. The strange thing is that the lesion had finally started healing when the fever hit. Anyway, they biopsied the lesion and we just learned yesterday that it was a staph infection. The antibiotics they already had him on were the correct ones for staph and that's why the lesion improved quite a bit while on the IV antibiotics. All the other tests (multiple blood cultures, urinalysis, nasal swab, x-ray, etc) were negative so the docs are pretty sure this is where the fever/infection was coming from.
As for the diagnosis of avascular necrosis (AVN) in both ankles, that was pretty tough news to hear. The AVN was caused by the long-term high dose steroids Dean had to have for GVH of the gut after transplant. The high dose steroids reduced the blood circulation in his bones causing the bone tissue to die and become chaulk-like and very painful, and the bones could even possibly collapse. The orthopedic doc said the AVN is pretty significant in both ankles and prescribed walking air casts for both ankles to give him support but the best thing is for him to not put weight on them at all and use his crutches or wheel chair. They also referred us to Dr. Varner, an ankle surgeon at Methodist Hospital in Houston. Dr. Varner specializes in ankles only and will hopefully let us know if there are any other treatment options. Dr. Andersson, Dean's transplant doc, said AVN in the ankles is very rare. He said usually it affects the hips, knees, and shoulder - in that order. Dean actually took the AVN news better than I did. He said he didn't have any regrets about the docs using the steroids, because he said if they hadn't, he wouldn't be here with us today. I think as the reality of the AVN diagnosis sinks in, it'll be harder on Dean mentally so please keep him in your prayers. What was so devastating is that unless there is some type of surgery such as fusing his ankle or ankle replacement, Dean's quality of life will be even more limited. He's been through so much these past few years and it just breaks my heart that he has this latest challenge to endure and overcome. However, when we got home last night we stopped by Jerry & Mandy's house and got to see our precious grandson Jonah smile and then crawl for the first time and that made it all worth it for Dean to keep fighting!!! Tex, any insight or words of advice you or others can provide regarding AVN would be much appreciated.
Dean's Dad was also discharged from the hospital on Fri. of last week and sees his cardiologist tomorrow. He's trying to eat a very very mild diet to avoid another gallbladder attack so that his heart can heal and hopefully recover enough so he can have the gallbladder surgery.
Even as difficult as things were last week, our family has so much to be thankful for this Thanksgiving holiday. We're thankful that we still have Dean here with us and he is leukemia free, and we're thankful Dean's Dad is still here with us too. We're thankful for the doctors and nurses caring for Dean & his Dad and we're thankful to have such wonderful family and friends to help support us during these difficult times. But most importantly I'm thankful for our Faith in God and the strength and courage He gives us to keep fighting these battles. I encourage each of you to count your many blessings this holiday season and cherish the time you have with family and friends. Thank you all so much for your continued thoughts & prayers and love & support.....Betsy
Betsy, while i don't know very much about avn treatment, i do remember mikes mom on this forum writing about michaels avn. He ended up having core decompression which worked wonderfully for him, if i remember correctly . Mind you, it was his hips and he was around 17 years old which makes a difference in bone growth and repair. But maybe that is an option.
It's great to hear that both Dean and his Dad made it out of the hospital in time for Turkey Day. I hope things keep improving and there is a good solution for Dean's ankles around the corner. Also hoping that his Dad can get stabilized so he can get the treatment he needs.
I admire your attitude through all of this. It's great that Dean and his Dad are home. Dean seems to absorb each challange as it comes along and that's going to help him in the long run. It won't be easy but he's fortunate to have you supporting him along the way.
Wishing you a relaxing Thanksgiving....